Forgiveness-an alzheimer journey by Sue Scoggins

I've had the pleasure of meeting with two friends who've placed their wives in a facility in recent months.  I could see the stress in their eyes.  I could see the loss, the confusion, the bewilderment of their years of caring for their wives and having to give it up.  Underneath their pleasantries and their courage, I could see their pain.

One topic we shared was the sadness, madness and bewilderment of the fact that their close family members have never come to see their wives.  Such wounds added on top of their already unbearable loss..well..there are no words for it.  These were people who were close back in the day..... when they were healthy.  So many loved ones use the excuse..."I just couldn't  stand to see her that way." or "it would hurt me so much to see her like that." or "I don't know what to say."

Grr!  Hogwash! Get over it!  It's not about you! This is no time for selfishness.  It's about the loved one who needs you. People act as if the Alzheimer patient is already dead.  But what they don't realize is that THEY ARE NOT!  Jerry is still here.  Betty and Mary Beth are still here.  Allison still cries and then she laughs.  YES, they still have names and they are HERE!  They are not well...now is when we need you.   It's still not over and, although we are becoming accustomed to it,  our hearts are still  filled with sadness, we are observant of meaningful relationships, those who have stuck by us, and aware of those who have not. 

So, what do we do with all of this?  How do we respond to the disappointment from people we thought cared?  I suppose, after pondering a bit, I've learned to let it go...or at least stuff it down so deep that I don't think about it anymore.  There was a time that I really resented it.  After all they once were "best friends"  "brothers"  "sisters"....Jerry use to ask about them.  But that opportunity for a relationship or any closure is gone.  I don't hold resentment anymore.  We've moved on.  How could they possibly understand?  How could I hold them to unrealistic standards if they just don't get it.  Only those who have been on this journey can understand.  

When Jesus was on that cross, being tortured, he cried out, "Father forgive them, for they know not what they do."  

I am a PURE human! I have very human frailties and I struggle with this...as many, many Alzheimer loved ones do.....but forgiveness is the only answer.   If I let myself dwell on my resentment or disappointment, it takes away whatever joy I can find.   Forgiveness, is not necessarily for the recipient....it is for the forgiver.  To forgive allows us to "put the transgression aside", allow God to handle it, and let us move onto more positive moments.  Joyous moments  that would be robbed if they were spent in bitterness.

I hope this helps you newbies and oldies.  We are in this for the long haul so we need our positive and beautiful moments.  Carry on.

Spiritual

 Since so many have commented on how candid this blog is..I feel that I have to share this.  It's what keeps me going.

Wednesday, the social director from Hospice called and regretfully told me that they would have to discontinue services again.  Jerry danced with the nurse!  Three months ago, he could hardly stand.  The Hospice staff have grown attached and tried their best to keep him on services but he has stabilized again.  What does a caregiver do with that information?  How does a caregiver of 14 years cope with knowing that this will continue.  Do I feel happy?  Do I feel discouraged and exhausted?  Do I panic over the financial devastation again?  Do I feel guilty?  Do I feel comfort that I don’t have to face a funeral quite yet?  All the compartments in my little brain are so jumbled and confused.

Many of you will not understand these things.  How could you?  I’m being honest.  The long period of grieving sometimes gets the best of me.  I CAN’T BELIEVE I AM SAYING THESE THINGS “in public”.  I am very much “in love” with my dearest Jerry.  He is the love of my life and has been since I was 17 years old. We made a vow to love, honor and obey. Til death do us part. I wonder in mind ...This beautiful man ....oh...what is going on here....where did you go? When will you be freed from the shackles of this disease?  Your beautiful eyes are still here and you still light up when you see me.  The road is long.

I’ve just come off of a whirlwind month of art events, a new grand baby girl and a trip to New York with my favorite son. Life was exhilarating and very far away from Alzheimer world.  Now, I’m back and it is quite an adjustment to come back to my empty house and isolated beach.  As beautiful as it is....it is a place of solitude and can be dangerously depressing if I’m not careful.

SO...here’s what happened to me this morning.  When the sun came up my eyes popped open as if calling me out to the beach.  I put on my jogging shoes, downed a cup of coffee, and called the dog.  Montana was so excited when she saw me pick up her ball and chucker.  Today, I grabbed my music and put on my Pandora gospel station....a little meditation music.  It began with Fernado Ortega and his beautiful piano...no words.  God drew me so near.  It was as if He and I were all alone on this magnificent beach. As the music took me away, I prayed my questions out to the Lord.  What is going on?  What do I do?  Where do I go?  Then a song by Cece Winans came on ....Alabaster Box.  I didn’t really know who was singing but I could hear the words

And I've come to pour
My praise on Him
Like oil from Mary's alabaster box
Don't be angry if I wash his feet with my tears
And dry them with my hair (my hair)
You weren't there the night Jesus found me
You did not feel what I felt
When He wrapped his loving arms around me and
You don't know the cost of the oil
Oh, you don't know the cost of my praise
You don't know the cost of the oil
In my alabaster box

Mary adored her Jesus.  I understood her grief and her sorrow.  I understood her praise as she washed his feet with her oil from her alabaster box.  As a visual person, I found myself “out of myself” and envisioning this God, unfathomable, and how how blessed I am to be his.  I relished in that time as the waves rolled over my feet,  the silver sunlight glistened on each crest as it moved onto the shore and the birds skimmed in precision over the surface.

As the music ended, I realized that no earthly condition can rob me of this.  Nor can anything match up to it.  The piano, again, began to play and my heart became light but full with a sweet sense of contentment that I am right where God wants me to be. It's was as if God said, "Be still and know that I am God. Listen. Walk with me. I'm here."  

Perhaps this is another gift...a bit more time to love and be loved in Alzheimer world.  There are still lessons to be learned. It is good. 

As I made my way back across the sand my time of worship was coming to an end.  I had been so moved by this instrumental,  with no words being put into my head, that I pulled my phone out of my pocket to see what was playing.   There on the screen read,  Til Death Do Us Part by Steven C. 

Just wanted to share.

Acceptance World

I suppose the reason I don't cry as much and that I can laugh more is because I've reached a point of acceptance.  For at least 10 years it seemed, in my denial, that we could beat this thing.  We gave it our best shot!  I kind of liked the place called denial because it kept us in a place of "positive". It's a good place to be for a while.  What I mean by that is that dwelling in the destruction of the disease causes a huge weight of depression, a real buzz kill.  Almost devastating to watch.  So........."Alzheimers?  What's Alzheimer's?  Never heard of it."

As long as I didn't give into the demon called Alzheimer, we could overcome just about anything. With a few modifications, we could live life normally; eat, drink and by merry, so to speak.  As long as Jerry had his good days, somehow in my mind, I felt he would get better.  We didn't stop.  We kept going.  

I remember probably about eight years ago, we were in California visiting our son and his wife.  We surprised them. It was so exciting to see the thrill on their faces.  Everything Jerry and I did was usually my idea.  I hated that.  Before "A", Jerry and I both would be spontaneous. We hardly ever planned anything..but one thing we knew is that we always went out on the weekends. Neither of us liked to "do nothing".  (accept when football game was on, of course.)

Either one of us might get an idea to go somewhere, or do something TOGETHER. Then usually we would do it.   After "A", Jerry began to lose his "initiator" button.  His "idea" mechanism.  Everything was always up to me to initiate and plan. And usually Jerry was reluctant to go along with it.  So, he would follow me around like a puppy dog.  It got on my last nerve.  It was like pushing a rope!  Why did it always have to be MY idea?  I didn't realize the initiator had died and that it was a part of his disease.

While out in California, we went to this beach called Point Dume.  Like so many  California beaches, it was set into this craggy cliff and in order to get to the beach you'd have to hike down to the bottom where there are all sorts of starfish and sea urchins.  It was beautiful!  Our son was so happy to explore this beach with us, but Jerry would lag behind with a grumpy look of annoyance on his face. Sort of reminded me of Walter Matthow in Grumpy Old Men.  I would exhaust myself  trying to be positive.  "Oh look!  It's beautiful.  Let's go."  We' walk down the trail and Jerry, dressed in his white golf shirt and faded kaki shorts, would follow behind about 15 feet. Needless to say, I was about to become a naggy wife.  (that's not a good thing!)  Once, we got to the bottom, Jerry would just stand there while we would skip over rocks and collect starfish. It was so frustrating and I just couldn't understand why he wouldn't participate.  Now, I realize that it was the disease.

Here's the deal.  Part of the exhaustion, thus depression, of being a caregiver is to constantly have to be "up".  Constantly have to be positive.  At the point of that California trip, I didn't realize that Jerry's disease was causing him to be so negative.  It made me so frustrated and angry.  Here I was, trying to be a brave caregiver, provide a happy life experience, in the midst of Alzheimers.  I was trying as hard as I could...everyday....and he didn't even seem to want to try.  Grrr! 

Those were the good ole days.  The days we can't get back.  I see now, somewhat,  what was Alzheimer's and what was not.  Over time, the progression has continued.  It has been hard.  There have been lots of tears.  We have finally given up the denial and the fight and have moved to our new "A" worlds. Jerry has moved to Alzheimer's world completely where he is  secure and happily unaware.

I've moved to Acceptance world. Are those the Kubler-Ross stages of grieving?  Denial. Anger. Bargaining, Depression, Acceptance.  It took a long time to get here...14 years....but I'm here now.   The dark days are compartmentalized and the light days are more frequent.  Acceptance world.  Let their be more smiles.  

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.

Tailgating

If you ever have to considering a facility for your loved one, remember to check out the activity director.  "Activity director?" you say..."what about the safety, staff, the cleanliness, the urine smell?"  Well, those are a given.  Of course, it's imperative that our loved ones have a safe and secure environment, with a well trained staff, that is spotless with no hint of urine smell.  That's what we want.  However....don't forget the activity director.  Our girls....I just don't know how they do it.  They truly love their job and it shows!

When I drove up into the parking lot yesterday, a pick up truck was backed up to the entrance of Jerry's facility.  Draped from it were football banners and the tailgate was loaded down with nachos and chicken wings.  We were having a tailgate party!

It was perfect football weather, clear, sunny and cold.  Every resident was dressed up in their favorite team attire.  For those who didn't have anything to wear, team shirts were provided.  Tables and chairs were circling a game of corn hole and there was lots of cheering going on.  

The great thing about where Jerry lives is the fact that the residents in the memory care unit are incorporated into the activities of the healthier assisted living folks.  Remember, since Jerry is so much younger than the rest of the "others" (the healthy elders), he is treated royally by all of them.  They are endeared to him and think of him as their own.  

When I approached the "stadium" I could see Jerry sitting at a table with his buddies.  He had no idea what was going on, but being surrounded by all that positive energy gave him a peaceful and happy countenance.  To my amazement, he saw me and began to move.  (That always amazes me that he knows me.)  I went over to lift him out of his chair and walk him into the sunshine closer to the corn hole game.  Some of those folks can really toss a bean bag!  

I've found it a bit easer when I visit Jerry during an upbeat activity.  When it's just me, we walk and I talk.  But I will admit that sometimes I'm at a loss for words..especially when there is no response.  So, it's nice to have energy and input from other people around you.  The activities provide stimulation and a chance to get out of the unit.  The spice to their day and helps avoid each day from becoming another Ground Hog Day. Last week was a Veterans day celebration.  Today..it was a tailgate party.  Tomorrow night it will be a country band.  Next week they'll have church on Monday and maybe a "mocktail" party or a field trip the next day.  

Activity directors!  Thank you for all you do!

Those Vows

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

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

Very vintage!  Hippy days.

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

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

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

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

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

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

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

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

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

Little Miracles

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

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

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

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

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

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

Loving Networks

Most of this week, I've been able to spend with two beautiful friends.  Shawn, who's been battling breast cancer this year, and her sacrificial best friend, Brenda.  We've shared how our "life altering" experiences have been a blessing in so many ways.  It's been a time to give love and to receive love. Shawn's experienced such love from so many people during this time. These gifts of love have brought her such an awareness that now has sparked in her to give love.  And in an inexplicable way, the more love that has been given out....the more love has been returned exponentially.  It's amazing how these experiences bring networks of friends and supporters that carry us through.  Shared experiences.  Like minds.  Commonalities.

I've met with most of the hospice angels now.  This is another network that radiates love.  Interestingly enough, Jerry has improved in the last few weeks.  He has started eating again, looks a bit less weak and is even standing up a little straighter.  Since I don't go visit every day, I rely on aide reports.  I've heard that one day he is "spot on" and the next day he sleeps all day.   On off on off....up down up down...such is the life of the Alzheimer patient.

Last Sunday, when I arrived, I saw his former hospice chaplain sitting on the front porch. He's a gentle soul with a huge smile and firm voice, who truly called to this line of service.  We chatted for moment and then I went back to get Jerry while he got his computer set up.  

Some things have changed since Jerry was last on hospice.  DOCUMENTATION.  The new medicare guidelines require multiple questions to be asked and documented while in the presence of the patient.  These new rules and little laptops get in the way of having an intimate and personal visit.  Just a tad annoying.  It's feels like more of an interview...so get ready for that.  Hopefully, this is just a learning curve getting use to the new computers and guidelines.

Thankfully, Jerry was assigned to the same hospice workers as the last time.  It was like "old home" week.  (No pun intended.)  Miss Penny, the social worker, happened to arrive at the same time, so we all had a really nice time getting reacquainted around the table.  Several attempts were made at communicating with Jerry.  "Roll Tide."  "Go Alabama." Hoping to spark some deeply embedded memory from long ago.  We were only met with blank stares and questioning eyes towards me.  In spite of his look, I could sense his calmness about his being with them though. Mostly, we chatted about his current condition and peppered the conversation with the frustrations of documenting.  Our visit lasted about 45 minutes.

Here's the really neat part.  At the end, "Mr. Chaplain" said he'd like to read a scripture. Lovingly, he turned to Ephesians and with his gentle voice, and great conviction, read the passage. After reading he told us a story of how he was visiting with a gravely ill blind man recently and asked him, "How can I pray for you?"  The man sat there a few minutes, then said, "Just pray as if you love me."  We all need to feel loved.  Then, he directly asked Jerry, "Jerry.  May I pray with you?"  All of a sudden, coming out of his silence, Jerry leaned forward, slowly moved his hand into the chaplain's hand and said, "That would be nice."

There is no greater love than this.