Grace

In the grand scheme of things.......GRACE.

Have you ever felt confused?  Have you ever had a nagging pain in your neck or your back?  Or have you ever tried to keep a migraine at bay?

Most of us have experienced all of those things.  Think about it.  When you are trying to keep a migraine at bay...it's all you can do to smile.  If your back is giving you nagging pain, it's all you can do to stay upright.  When you've had a confused moment...doesn't it kind of set you back a notch or two?  Don't you question yourself?  I do.  I wonder if I'm losing it.  I tell myself to slow down, keep calm and think things through.  It's totally self absorbing.

I can imagine this is the way it is in the beginning to moderate stages of Alzheimer's Disease or dementia.  The fact that you are aware that you are "losing it"...just the awareness...must be totally mind consuming.  "No.  I'm going to beat this.  I'm NOT going to get confused.  I'm going to keep it together."  I remember Jerry saying those things.  I know he tried so hard for as long as he could.   It was so difficult....then add to it the self doubt, discouragement and depression that underlies it all knowing you're not who you once were.  AND, fighting off knowing what lies ahead.  It's unfathomably difficult.

Looking back, I regret times when my demands were too high.  I regret the times I expected him to put the chair back under the table or close the cabinet doors and drawers. How much was the disease and how much were these things just laziness?  I regret the frustrations that got the best of me when he just "didn't get it".  Why he would let the dog in, then out, then in again.  I promise I'm not beating myself up over it.  How could I have known that it was a part of the disease.  What did I know?  I didn't know a soul with Alzheimer's disease.  Every day was a new learning experience.

For all you newbies, remember the word GRACE.  GRACE,  emblazon it on the back of your hand so that you are reminded every day to give your loved one grace.  In those AWARE days, when they know they are losing it....they need grace.....they need unconditional love and mercy.  They are trying.  Even when they are grumpy and negative.  Even when they slap you on the butt in public. Even when they repeat themselves among friends and say things totally unrelated to the topic of conversation.  They are trying to keep it together.  They are trying to be normal.  Whah!

Dear caregivers, I know it's hard.  It is the hardest task you will ever have...to care for this loved one.  But, you can do it.  With God's grace and strength YOU CAN DO THIS.  Our loved ones need us.  This is our mission for now.  The rewards will be great so keep it up.  WE CAN DO THIS.

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.

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.

Hospice - An Alzheimer Journey by Susan Scoggins

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

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

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

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

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

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

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?

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.

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.