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.

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.

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 !

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.

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.

’Til Death Do Us Part - an Alzheimer Journey

This whole scenario with Dotty and Bob DeMarco (www.alzheimersreadingroom.com/) has really brought things home to me...  That this journey will eventually  come to an end. As with Bob, this Alzheimer journey has lasted for so many years that it has become a way of life.  Our way of life.  I honestly think of Jerry’s and my relationship to be nothing other than a beautiful love story.  It's about our saying “I do"... " til death to us part”  in our young years, when we had no idea what it meant.  We were so young.  I was 19 and he was 24.  I was entering college, he was graduating.  We were young and stupid and thought we knew everything.  We lived high on the hog.  We travelled.  We lived pay check to pay check.  We grew to become responsible.  We gave birth to three wonderful children.   We buried our parents.

I remember when he was returning from a trip, I ran down the halls of the airport and threw my arms around him.  It was like a movie. I remember to this day an elderly woman who watched and smiled. There were times, we fought.  Plenty of them.  But no matter how hard it got, we knew we would stick it out.  We had been blessed with parents who stuck it out...so would we.  We had made a commitment to God.

Well meaning friends encourage me to move on.  They say he’s not there anymore.  They say he's not the man I once knew.  While I will admit I would love to be held and have someone care for me...it is only a slight temptation. Very slight.  I am fully committed and  am reminded of our commitment every time he comes to me.  Now He throws HIS arms around ME.  He is still there, in fact, after we finished at the park yesterday, he abruptly got up, turned around and said in a shaky voice, "I love you".  Unbelievable how, he has no words and hasn’t for years, yet those words came out.

In his lucid moments, Jerry knows he’s in decline.  He tries to say it.  I think he’s afraid.  Not for himself, but for me.  He has always been my protectorate.  He knows he is leaving.  He doesn’t want to.  I cling to our few moments of lucidity. The depth of our unspoken connection comes only after many, many years together.  It is a reward.  A blessing from God that could never have been imagined.  There are no regrets.  I don’t know what it will be like when he’s gone.  I don’t know if I’ll be prepared even though I’ve had all this time. Others have experienced loss and have survived.  I will too.  Then I’ll move on, counting my blessings.  I’ll move on knowing we have experienced each other from the beginning to the end.....and I’ll be thanking God for a truly beautiful marriage.

Veterans Benefits - an Alzheimer Journey

The financial expenses of caring for someone with Alzheimer disease can be devastating.

For those of you who are entering into this journey, I would recommend consulting with an experienced Elder Care Attorney to have an overall evaluation of your financial situation.  Your attorney can help you plan and watch out for pitfalls that you’ll want to avoid in the future.  You’ll need to check on insurance policies, living wills, health care power of attorney, property titles, etc.  You can find referrals for attorneys through your local Alzheimer Chapter  (in North Carolina, www.alznc.org/) or senior resources organization. ( in Wake County, www.resourcesforseniors.com)

Today I want to mention Veterans Benefits.  Even if your loved one did not serve for an extended period of time, he/she may still be eligible for some sort of assistance.  The application  process takes a long time, so check early and get the process started.  For us, I applied for VA benefits several years ago.  Jerry could have received medical visits, prescription medications and occasional respite visits, even glasses at a much reduced cost.   At the time, we were still very attached to our own doctors, so we did not take full advantage of the VA services.  However, once I placed Jerry in a facility, I began to panic about the cost.  I was afraid our money would run out.  Our situation is unique in that Jerry was very young, he was the primary income earner, he was not eligible for  medicare or medicaid assistance toward the facility cost, nor did our private medical insurance policy pay for anything.  EVERYTHING is private pay!

In a panic mode, I contacted the Veterans Administration in my area again.  I was told about  Aide and Attendance. All the information is online, but this kind gentleman explained, in a nutshell, what I might be eligible for.  The qualifications are pretty specific.  If you qualify, the veteran may be eligible for a monthly income to help offset the cost of caring for their loved one at home or  in a facility.  You can read about this online at www.va.gov/.  Again, the process is long and laborious, but well worth it.

Now, I know from experience that the information can be overwhelming in the beginning stages of this journey.  In fact, there were many days, I couldn’t read or absorb another thing.  I was so confused at all the disjointed information being thrown at me from doctors, social workers, insurance companies, alzheimer organizations, attorneys, etc.  It was too much!  After all, when was I going to do the laundry, sweep the floors, fix the leaky faucet and prune my shrubs!

Just take a deep breath, tackle one or two things at a time, then go out for a bike ride.  Try not to allow yourself to BREAK!  Trust me.....it WILL work itself out in time.

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.

Weekend Visit - an Alzheimer Journey

These back to back art shows in Raleigh have been so exciting and uplifting for me.  As a caregiver, it’s imperative to survival to keep moving forward to stay positive. In the past, Jerry was the extrovert, off the cuff person.  I was the introvert, behind the scenes, analytical person.  Now, the rolls are reversed.  While it is energizing to put on these shows and meet people, I am still an introvert at heart.  Think way too much.  Verbalize my thoughts way too much.  THUS, THIS BLOG!

Sunday, after church, was the only day to visit with Jerry this week.  My normal schedule is every three days, but this time it had been a full week.  Deviating from the schedule  usually gets me into trouble.  I was tempted to stay  in my own positive world, away from him, avoiding reality.  But my heart told me I had to go.  The drive to New Bern is two hours.  Two hours of thinking!  Down and back.

When I arrived, Ro, my favorite CNA was on duty.  (I have lots of favorites.)  We all probably wondered if Jerry  would recognized me.  When I walked through the doors, Jerry saw me and his eyes lit up.  He reached out his arms and walked toward me and we embraced with bitter- sweetness again.  Sweetness that he knew me, bitter that it was in this way .  I was particularly emotional because it had been so long and I was reminded again of how much I missed him.  It never goes away.  I was still able to take Jerry out but soon realized that these types of ventures may be coming to an end.  We went to our pizza place but this time it was more difficult.  He was more confused and it was hard to get him to sit down.  He didn’t know what to do with that booth or chair and once seated, he kept getting up.  Thank heavens the place was empty.  The waitress was so kind.  After the confusion of getting him seated, I tried to make small talk to keep his attention.  There was no response.  But then I said, “I went to church today.”  He burst into tears.  THAT KILLED ME!  It was as if he had lost a child or something.  It told me that those things that he holds dear are still within him.

OK.  Onto positive thoughts.  Before going back, we drove over to the park and I put on an oldies station.  Jerry, immediately perked up and we threw a small football.  He loved that!  He even ran a few steps and threw a spiral!   I let Montana go and we played “keep away” from her.  It was a beautiful 15 minutes.  Whew!

The drive back forced me to think forward.  I couldn’t stay in the Jerry mode.  (otherwise, I wouldn’t have been able to drive.)  I’m hoping to think of ways to have more effective visits.  Maybe visit during an activity, or forgo the eating of a meal.  Maybe just a ride to get ice cream, then to the park.  Keep the music going, so we won’t get melancholy.  Keep the visit short, between 30 minutes and an hour.  Avoid staying too long, so that we don’t get too connected.  Hmmm. There I go analyzing again!

Out for Pizza

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

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

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

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

New Start Up - Book II - an Alzheimer Journey

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

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

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

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

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

Why I Paint - an Alzheimer Journey

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

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

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

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

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

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

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

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

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

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