Laughter - an alzheimer journey by sue scoggins

laugh |laf|verb [ no obj. ]make the spontaneous sounds and movements of the face and body that are the instinctive expressions of lively amusement.

Keep on laughing!   

Keep on laughing!

 

 

Have you ever laughed so hard that you cried?  Better yet, have you ever cried so hard with a friend that you broke into laughter?  What happened?

Laughter seems to relieve the tensions of stress, unlatch the chains of depression, and re-energize the last thread of exhaustion. There's nothing like a good dose of the PBS programs Car Talk or Wait!  Wait!  Don't Tell Me to make you laugh...or better yet, visualizing Jennifer Lawrence falling up those steps at the Oscars in that gigantic dress.

Today Jerry was sleeping at the lunch table.  Mary Beth and Jerry are both in their 60's and are seated together.  The other residents are in their 80's, 90's, 100's. Both, Jerry and Mary Beth  are unable to speak more than an occasional word from time to time.  Mary Beth is still able to eat with her utensils and usually cleans her plate.  "Hi, Mary Beth!"  I said. With her delightful eyes and raised eyebrows she sputtered a smile back at me.  Jerry, dressed in his maroon sweatshirt, still was sleeping with his head slightly tilted back and his mouth dropped open.  ...sort of like someone in the airplane seat next to you, head tilted back, mouth dropped open, snoring....accept Jerry was not snoring.  You wonder whether to wake them up or not.

Anyway, lunch was being passed out to all the residents.  Most of the inmates (oops.  I meant residents) were eating quite nicely, some with fingers, some being spoon fed.  Jerry continued to sleep in his seat.  Sitting next to Jerry, I chatted with the other residents and the staff  and said, "This handsome Jerry was a mega salesman back in his day. He could sell ice to an Eskimo.  Right Jerry?"  The staff smiled.  "In fact, he'd have them building fires in the snow  just so they would see that they needed ice.  Right Jerry?  Isn't that the way it was?"  I could see Jerry out of the corner of my eye, still sleeping,  "Right Jerry?"  All of a sudden he opened his eyes and, with a slight smile across his face, he leaned forward gingerly reached to pick up a glass of milk.  I said, "Yeah, Jerry.  Get that gin and tonic.  Back in the day, when we'd fly to those sales conventions those flight attendants would serve us gin and tonics with warm mixed nuts.  Look at those warm nuts, Jerry."  When I said "warm nuts" he reached over to his plate and picked up his chicken sandwich.  Doesn't that beat all!  And he didn't even know the difference.  We all howled laughing...not AT Jerry but FOR Jerry. .. FOR ALL OF US!

You see, whether the resident is aware or not, laughter sets the tone.  It determines whether its a depressing place, a somber place, or a happy place.  It seems to me a happy place would be a better place to live (or die).

Next time I'm going to try to remember the place where we stayed in downtown San Francisco while we were on a business trip. It's the one where Queen Elizabeth stayed. I remember how we'd have our G/T street side while we talked and people watched during cocktail hour.

So, try it.  Before you visit next time, find a memory or something funny to get you in the mood.  Make yourself laugh, some how, some way. Watch Alex Baldwin in it's Complicated or Jack Nicholson in Something's Gotta Give.  Your loved one will thank you for it.......or maybe not.

 

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.   

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.

 

 

 

 

 

 

 

 

 

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.

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.

’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!

Caregiver Tips from Santa Barbara - an Alzheimer Journey

Today, I'm going to take a minute for caregivers.  Tips on surviving and thriving.

In an earlier post, I mentioned it's taken a year and a half before I was healthy enough to continue this blog.  That's because I had reached a breaking point of exhaustion and grief and it was taking ALL of me to express any kind of laughter or light heartedness.

Step one.  Breaking point.   I got so angry that I made a resolution that Alzheimers was claiming  Jerry, but it was not going to take me too.  That decision changed my life.  I began to schedule my visits with Jerry to every three days, so that I could be "normal" in between.

Step two. Exercise.  Exercise, you say?  Listen, I was so beaten down that I could barely walk around my block.  I am not exaggerating.  I started Zumba classes,  cried through the first class and almost walked out with my head hung low.  I was a mess!

Set goals to keep on living.  It's been  7 months.  Today, I actually lifted my feet off the ground in a "jog" step  for 6 CONSECUTIVE  minute intervals  and I'm working myself up to my first sprint triathlon.  (well…..maybe)

Step Three.   Acknowledge the grief.  There are still times when I get overcome with grief.  While Jerry is still living, our life, as we knew it, is gone. The most that is there is the essence of who we were.   When tears of grief overcome you, let them flow.  You may as well NOT try to stop it.  When you feel you are drowning in tears and you've taken your last gasp of air, reach down into the inner most of your being and, with a mammoth stroke, thrust yourself back up  to the top.  You'll come popping out of that sea of despair  and you'll gasp in the largest breath of your life.  THAT IS LIFE!

Step Four.  Change of venue.  On occasion, get outta town!  Refresh your spirits.  Keep on trucking.  Move forward.  Make goals.  Don't dwell.  Become focused on flourishing the new you.  A new you will make a much healthier caregiver.  A positive caregiver is a better caregiver.  A happy caregiver makes your loved one happier.  Now, instead of hanging on Jerry and crying in his arms, I can go back and dance with him.

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.