Those Vows

Scrambling to get my shoes on, I snuck into a wedding, late, this afternoon and sat in the balcony.   The view from the balcony, overlooking the wedding party and the guest, conjured up lots of reflection and I found myself smiling with the sweetness of the moment.  Such a young couple, just starting out, the bride all dressed in white and the groom all dressed in his tuxedo with pink tie and boutonniere. Such naiveté as they entered into the promise of their lives together.

Unless we're fortune tellers, most of us don't know what lies ahead.  We have no idea of the promises that we are making when making those wedding vows.  We enter into this thing called marriage, as idealists.  But, what about when the outer beauty and perfection wear off?  What about when the days are numbered or one gets grievously ill.  What about when the "cuteness" wears off and we have to wipe bottoms or spoon feed the other person?  The wedding vow is so starry eyed and romantic at the time it's being spoken...but what about later on down the road?

Very vintage!  Hippy days.

I am so thankful that Jerry and I didn't have big grandiose ideas of marriage. I suppose we really didn't think too far ahead.  We didn't have a 5 year plan.  We just made the commitment and never looked back.  This was the same example set by both of our parents, for which I am so grateful.   Maybe I had more romanticized the idea but Jerry was more of a realist.  In reality we were, and still are, life partners more than anything else.  Whatever life threw at us..we would tackle it together. That's a pretty serious commitment!!    I couldn't help but get a tear in my eye when this couple said their wedding vows.

So, here we are.  Now.  43 years later. 

Earlier, when I drove into the parking lot the shuttle bus was in front of the facility. The unit was going on a field trip and Jerry was on board.  I parked the car and walked to the front of the bus and watched him as I came around front.  Once into clear view, our eyes connected and he raised his arms into the air...as if to say, "hallelujah".  What sweetness!  His eyes are still glazed but so sweet and vulnerable. Like a new born baby.  (I just had one of those...will write about that later.)

Jerry was eager to get up from his seat and we moved the resident who was next to him so he could get out.  I took his hands and as he rose, ours eyes locked.  Honestly, I don't know if he really knows who I am...but he knows I am SOMEONE. Someone who is important to him.  Sniff!  

There is no understanding this or explaining this to a newly wed.  No possible way of understanding.    I could never have understood this kind of love connection either, if we had not stuck it out.  

The activity director and I decided that Jerry would be just as happy going with me for the day.  So we shuffled over to the car.  Jerry's long arms and legs can be quite stiff and resistant so it is a bit of a challenge to get him into the front seat of a car. It's like folding up a piece of Styrofoam...bend it until it breaks...accept I don't want him to break.    And the whole while that I'm trying to manipulate his body, he's looking perplexed.

Once he was in the car, I noticed that he was wearing someone else's old sweatshirt and that his pants had a hole in the crotch.  Honestly, I've been a bit neglectful in getting him new clothes.  So it was time.  TJMaxx was around the corner, so I said, "Self.  What the heck.  Take Jerry in and get him some new jeans.."  So what if people stare.

Now this is the first time I've taken Jerry into a store in at least a year. In fact, I rarely take him off campus.   His state has been so fragile and I haven't wanted to put him in any confusion.  But, actually, this worked today.  He's actually so unaware that he wasn't confused at all.  I held his hands onto the cart and talked to him the entire time.  I'd hold a shirt up in front of his face and talk, as if he could understand.  He couldn't.   I'd place jeans up to his waist as if he knew what I was doing.  He didn't.  I bought him new jeans.  A new shirt or two.  New jammie bottoms and long sleeved t-shirts to warm up his freezing arms. I kept my arm wrapped around his skinny waist and we shuffled around for about 15 minutes.  

I wouldn't trade that time for anything.   Short but beautiful.  The kind of time that a wedding vow cannot fathom.  But a good time.  A reward that can only be experienced after a long life together.

Little Miracles

It's 6am  and my mind is swirling with things to say.  There are so many things to be thankful for.  I've just come off of a month long art event and Alzheimer fundraiser and my thoughts are reeling.  I am so grateful.  So often I think this thing called "Alzheimer's" is catching.  Many times I find myself calling people by the wrong name, pricing my art inconsistently, forgetting what art is where.  It takes me a moment to collect and organize my thoughts when I'm put under pressure at an art event.  Sometimes I'm "spot on", sometimes I'm the poster child for Attention Deficit Disorder.  It's embarrassing.  It's a miracle that I can find my head sometimes!

I see little miracles all the time.  I guess it's an attitude....which is a miracle in itself!  When I arrived at Jerry's place to visit yesterday, I could hear singing.  The unit was quiet and I could see Jerry sitting, asleep, on the sofa in the living room.  All the residents were sitting around the room and the aide was in the corner singing ..."Daisy ..Daisy... Give me your answer do.  I'm half crazy over the love of you..."  A few of the ladies were singing with her. Let's call them miracles, too.  I began singing with them, waltzed on over next to Jerry and put my arm around his shoulder.  That was a miracle...the fact that I didn't cry.  Honestly, I really didn't even try to talk to him.  I just sat there like the rest of them, singing, and chatting with the aide and the other residents.  It was like sitting around the living room after a Sunday meal.  Very relaxed, warm and fuzzy. ..another miracle. 

Like in the last post, sometimes the only thing that is needed is just to "be".  To press up against him.  To feel his soft sleeve and to hold his hand.  That is a miracle.

I suppose I'm a person who does a lot of thinking.  My dad was like that.  He was slow to speak, read his Bible, and prayed for those who were laid on his heart.  As a child I use to get frustrated with him. I'd call him "the thinker", after the bronze sculpture by Auguste Rodin, The Thinker.  

It's hard to think this was our future.  Who would have thought that in our 50's Jerry and I would end up like this?  Who would have thought that the bright, magnetic, type "A" would end up so frail and in this state of non responsiveness?  Who would have thought that his quiet, introverted bride would become an artist and extrovert. Now, THAT WAS A MIRACLE!  To have seen this future before it came to be would have been "unthinkable".  Yet, with each passing day, I see the future as not mine.  It is a walk.  An opportunity. So, without looking too far ahead, I follow this lamp before my feet, knowing God has gone before me. I see miracles all the time...spiritual miracles and I'm overwhelmed at the treasures I've discovered. 

Oh yeah.  We are about to have our sixth grandchild.  Our first baby girl will be born any day now.  Now, THAT IS A MIRACLE!  So, for you newbies out there.....you will make it.  YOU ARE A MIRACLE TOO!

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.

Screen Shot 2013-02-12 at 10.00.37 PM

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.

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.

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 !

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.

Never Enough-An Alzheimer Journey

Yesterday, my youngest daughter and I went to see Jerry.  When we opened the door to the memory unit, there he was.  It was as if he had been anxiously waiting for us.  All neatly dressed in his red Alabama t-shirt, he came with stretched out arms and wrapped them around Katie.  Yet, he was looking over her shoulder at me.  Puzzled, he knew this person he was holding was someone he loved.  “Hi Daddy” she said as she rubbed his arm;  eyes swelling up and turning red.  Mine do the same, now, when I envision them.  TIme with our loved one with Alzheimer is never enough.  The thirst is never quenched.

We turned and walked down the hall, arm in arm, Katie on one side and I was  on the other.  I wanted Katie to have as much time with him as possible, so I sat in the back seat of the car while we did our Dairy Queen run.  She drove to the dock, where we could eat our ice cream and watch the boats.  The country music was turned up and I could see Katie’s sweet hand, tenderly, stroking his hand to the fingertips.  He was sort of oblivious to it yet enjoying it.  The most important thing was eating his ice cream.  The most important thing to her was touching his skin.  I could see it in her eyes, weeping, but trying to be upbeat and strong. She was doing all humanly possible to communicate.  Jerry even eluded to her husband, “How’s....”   She told her how he was a dentist and would be so proud of him.  Her eyes began to well up again.  She told him of her baby boys.  She talked about how she use to swim and how he was at every meet cheering her on.

Katie is a daddy’s girl.  Their bond was strengthened through their competitive spirit.  He would constantly remind her of the “fire in her belly” mental state before a race.  She would give her all until he had to pull her out of the water.

In a way, Jerry’s competitive spirit has brought him this far.  It’s been thirteen years and he is still going.  The beginning diagnosis suggested 10 years.  He was, I’d say, able to “live” for the first 10 years and we altered our lifestyle to take in as much as we could. He had fire in his belly.  I believe he is still fighting this disease, but the fire is beginning to die down.  Alzheimer’s Disease  is definitely winning and will win physically.

Jerry’s spirit will continue, however.  Alzheimer’s disease will NOT destroy his spirit; not now, not  even after death.

For now, we’ll keep spending as much time with him as we possibly can.   Our love for him never ends.

Little Things and a Sense of Humor - an Alzheimer Journey

Today, when I drove up to see Jerry, the bus was out front.  The alzheimer residents had just returned from a “scenic tour”.  I think I mentioned in an earlier post about how cumbersome it was to carry these “tours” out.  It takes forever to load and unload.

When I approached the bus, one of the female residents was in her wheelchair on the ramp.  The activity director and a CNA were trying to figure out how to get her off the bus.  The ramp had decided not to work.   I looked up and asked, “What’s going on?”  The activity director responded with , “The ramp isn’t working.  Here.  Catch!”  The resident’s  eyes popped open!  We all laughed.  I watched as they painstakingly, picked each resident up and helped them walk...a slow shuffle...off the bus, then lift the wheelchairs down to the ground.  What patience!

It’s attitudes like this that are the little things.   The little things that are so important. In a year and a half, I’ve honestly not seen any instance where a staff member has lost their patience.  Not to say it hasn’t happened...afterall, it’s a thankless job and requires endless patience.  Last week, I witnessed a new patient acting out.  It was at the end of dinner time and the staff members were wheeling the residence out of the dining hall and into their activity room where they hang out an watch tv.  This gentleman began to get hostile.   Jerry and I managed to slink out of the way as we watched him stand up from his wheelchair, begin to yell, and push his wheelchair aside.  I witnessed as the staff calmly, but firmly  interacted with him, coaxed him back into his chair and swept him on down the hall.  They were well trained to diffuse the situation.

Anyway, today when I went to the back, I saw Jerry “sleeping” in the activity room.  That’s what they call it when he is dazed and out of it in front of the tv.  Barbara, one of the other residents, who always expects a hug, was sitting next to Jerry and began to wave.  I tiptoed over  to give her a hug and Jerry turned his head.  Up he “jumped” with his arms open.  I just love that!  Seconds later, he had no clue who I was, but he was ready to “get outta Dodge.”  I tapped in the code to the door and he opened it.  (I think he’s escaped from time to time because he knows just how to open that door.)  Our trip was to the Dairy Queen where I got him his favorite medium sized Butterfinger Blizzard.  That skinny thing ate the entire thing!  Trips to the “Queen” are good because it’s short, he doesn’t have to get out of the car, and well, .....it’s ice cream.

By the time we returned, the shift had changed.  He really didn’t want me to leave, but we used the old standby “divertion” tactic.  FOOD!  One of the CNA’s coaxed  him with some yogart.  The sweet kind.  He went right over and I slipped out without his even noticing.  Out of sight, out of mind.  He probably didn’t even realize I was gone.

Viewer Discretion Advised - an Alzheimer Journey

For a moment, I’d like to say something really personal.  Actually, the blog is very personal, however, this is the most personal of all.

In a recent discussion with someone, a comment was made, “You seem to think you need God in your life.”  I shook my head “yes”.  They respectfully but resentfully continued, "Well, I figure you’re an intelligent person so who am I to criticize you for that....but you certainly aren’t a sinner.”  I think this person views me as some sort of saint or something.  (Last time I looked in the mirror, my halo had a few dents in it.)  His words caught me a little off guard but it got me to thinking.

Here’s my belief.  Thus, “viewer discretion advised.”

I DO NEED GOD IN MY LIFE.  Having God in my life does not change my circumstances.  It changes my response to them.

Consider if I didn’t.  Jerry and I have been together for over 40 years.  We were childhood sweethearts.  We were, and still are, one flesh.  The “whole” that grew from innocence to seasoned.  Who experienced pain, struggled, played, fought, laughed, planned and built a life together.  We were a wink and a nod, the pea and the pod. (that’s from a song.)  We were the ying and the yang.  But, now ying has lost her yang.  Half of me is almost gone.   What if “US as a whole" was my identity?  Who would I be?   A fat old woman with a curvy hole in her side!  Incomplete!   Is it  possible, in the midst of such a dismal situation, to be positive?  YES!

Once I was someone’s daughter, but my parents died when I was a young adult.  I was a mom, still am, but my children have lives of their own. I’ve found art as a new passion and possibly a new identity.  However, what if my art begins to plummet?  Who would I be then?  A failed artist?   Is it possible to stay positive when life’s accolaides are so temporary?  YES!

At breakfast the other day, a friend and I were talking.  She is training for her first marathon and is a fabulous athlete.  Her practice  13 mile run, a month ago, was proof of her dedicated training and she was right on track to meet her goal.  Then her back went out!  For over a month she has not been able to move, much less walk or run.  Her disappointment and frustration was evident as she tearfully said, “I’m so frustrated.  I wanted to do this for myself.  I am an athlete.  This is who I am, my identity.”  Is it possible to stay positive when the goals seem unobtainable?  YES!

God is my “complete”.  It’s already accomplished, so I don’t need to search for my identity. I find fulfillment is directly proportional to the knowledge of God’s love for me.  His higher calling for me is the underpinning of my strength and a positive attitude.   The sword of Alzheimer Disease runs deep, yet wounds come as no surprise to Jesus who experienced them at his crucifixion. I’ve learned to serve in a way that  I never knew was possible. (And it’s not glamorous.)  The mission as caregiver is humbling yet an honor that has tested my faith and proved it to be true.

Life at the Home - an Alzheimer Journey

The seats were beginning to fill up at gate K7 in Chicago's O'Hare airport.  I was recently waiting for a flight to Los Angeles to see my son. I watch crowded hallways with anxious travelers scurrying to make their connections and was reminded of all the trips that Jerry and I had taken together. In fact, I  remember the exact place where we were sitting, when a cart drove by carrying  the famous Mohammed Ali.  Jerry jumped up out of his seat and reached out to shake his hand.  Ali graciously accepted the handshake.

Things are different now.  But, look at all the memories!

Life at the home is simple.  Simple is good for Alzheimer patients.  Jerry's body is stiff so it is a challenge just to lift a foot to put on a pant leg or put an arm into a sleeve.  Such things as these we healthy people take for granted.

Jerry lives in a secured memory unit that is attached to an assisted living facility. There is one long hallway with bedrooms on each side.  The dining room, activity room, and nurses station are in the center.   It's a cozy place, with warm and caring staff members, and very energetic activity directors.

To a person who is well, that setting would seem like a prison.  I can understand that.  But to an Alzheimer patient, the small setting is very secure and creates a sense of comfort. The routine schedule helps eliminate confusion and chaos that so often sends them into a state of fear and resistance.

Jerry's  day usually begins with a shower and shave, then breakfast at 7:30am.  Music plays to prompt the residents that it's meal time.  Once the music begins, the residents slowly begin to move toward the dining hall where each person has their assigned seats.  Jerry usually is snapping his fingers to the music.  There is usually a staff member at each table to assist in the eating process.

After breakfast, many of the residents go to the main activity room to take an early morning nap.  Usually every morning there are activities like  dancing, exercise, games, or singing.  Some residents are not able to participate because of the progression of their disease, but those who are able, often go on scenic tours around town.

Hospice has been ordered for Jerry, so he also receives visits from a social worker, nurse, CNA, volunteer, chaplain and a doctor.

Jerry is particularly attached to Tom, the maintenance man.  He's tall, like Jerry, about the same age, and easy going.  They are  frequently referred to as the "Tom and Jerry show".   Many times you'll find Jerry walking around with Tom, "changing light bulbs".  There's a certain positive perk when an Alzheimer patient is allowed to contribute.  It makes them feel valued and respected.

Most of the time, activities are held in the morning.  Once the afternoon begins to set in Alzheimer patients often experience "sun-downers".  Sun downers, in layman's terms, happens late in the day, when they are tired.  They can get confused, tired, and agitated so probably the that's the time when a rest would be a good thing.  Dinner begins at 4:30.  Then TV, then bed.

Like I said.  Things are different now.