Would You Change? - an Alzheimer Journey by Sue Scoggins

I've been listening to Tracy Chapman's  song "CHANGE"….over and over and over again today. It was given to me from a friend who is experiencing the same Alzheimer loss.

If you knew that you would die today

If you saw the face of God and love

Would you change?

Would you change?

If you knew that love can break your heart

When you're down so low you cannot fall

Would you change?

Would you change?

How bad how good does it need to get?

How many losses how much regret?

What chain reaction would cause an effect?

Makes you turn around makes you try to explain

Makes you forgive and forget

Makes you change

Makes you change

If you knew that you would be alone

Knowing right being wrong

Would you change?

Would you change?

If you knew that you would find a truth

That brings a pain that can't be soothed

Would you change?

Would you change?

How bad how good does it need to get?

How many losses how much regret?

What chain reaction would cause an effect?

Today I went to see Jerry.  It was a real awakening again.  A dog trainer had come with therapy golden retrievers.  They were beautiful and kind and attentive.

Jerry was seated in a comfortable club chair.  I went over and sat on the arm of the chair…placed my arm around him and stroked his hair.  He didn't know me.  

I really didn't look in his eyes.  I just looked at his frail arm and hand and felt his chest.  I don't understand how anyone can live in this emaciated condition.

He does not know pain.  He is not aware.  I am thankful.

I've been crying off and on today.  The end is near.  Days.  Weeks. Maybe months.

The reality is…..

If you knew that you would die today

If you saw the face of God and love

Would you change?

The end of life is real for everyone.  

Soon, the gates will open for Jerry.  One thing for sure is that Jesus is opening that gate and it will only be a matter of time before he is ushered into that beautiful unimaginable heaven where there will be no more weeping and he will be whole again.  I can only imagine what awaits this beautiful human being.  I will be only ecstatic with joy for him.  Not to be held captive.  To be free!

There is a time when all of us look back on our life and ask….."would I change?"

If I had known this was our journey would I have changed it?  No!  Would I choose it?  No!  But, I would do it again….marry Jerry again…live this journey again? Yes!  God has revealed himself in ways I could not have imagined.  

His grace and mercy..words cannot explain.  

Birthdays - an Alzheimer Journey by Susan Scoggins

Tomorrow is Jerry's birthday.  On February 27, 1948 a beautiful little baby boy was born.

From the Psalmist David:

Psalms 139:1-6. O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down. You are familiar with all my ways. Before a word is on my tongue you know it completely, Oh Lord.  You hem me in--behind and before; you have laid your hand and upon me.  Such knowledge is too wonderful for me, too lofty for me to attain.  

Some wonder why I feel the need to go see Jerry on his birthday.  After all, he does not know it is his birthday.  He does not know who I am.  Any day for ice cream, is a good day.  So, why ON THE DAY.  

I suppose it's because, I believe that God knows exactly what our days will be like before we are ever born.  Jerry's days are numbered, as are all of ours, and he is still with us.  Jerry cannot communicate and is not aware in MY/OUR world, the world outside of Alzheimers, but his life still has meaning.  His life has GREAT meaning, beyond our small little minds, and his Heavenly Father is holding him close.  According to scripture, God knows Jerry's thoughts.  He is familiar with all his ways...whether I know them or not.

So...tomorrow, I'll drive to New Bern to celebrate Jerry's life, his meaning, his contribution to this world.  Happy Birthday Jerry.

Valentine's Day-an Alzheimer Journey by Sue Scoggins

It's just a hop, skip and a jump over to Jerry's place.  (about 45 mins)  I remember reading in the bulletin  that they were having a Valentine's Day party.  I remember making a mental note to be there.  I forgot.

Today, I had a doctor's appointment and was planning on heading on up to see Jerry afterwards.  I arrived about 1:30.  The party was over at 1:30.  Oops!  When I headed on down the hall, the accountant waved and said, "he's in the dining room."  I waved back to her and made a turn to the left  into the dining room.  There were pink and red balloons attached to each chair and Jerry was sitting at a table with a crown on his head.  He and Sarah Sue were the king and queen!  Oops, again!

Thank heavens the entertainment was still singing and playing and Jerry caught a glimpse of me in his eye.  I went over to his table but by the time I got there, his eye had gone elsewhere.  I curved right on around to his left side and sat next to him. He wasn't sure what to do, but his arm gently patted my shoulder, as if to say, ......"I know you"....or "I like you".....or something like that.

A minute later, Sarah Sue came over to see me.  She was queen and she was waiting for her escort (Jerry) to walk her back to her room.  Sarah Sue, another resident and Jerry's neighbor,  is a stately southern woman with a down deep southern drawl.  She is very proper.   She is in her own world and takes care of Jerry.  She speaks quite fluently and tells me how it makes her heart pitter patter when she sees us together.  She tells me how much he ate and how sweet he is and if they are taking care of him and if he's walked or not walked down the hall.  She takes on the caregiver roll and tells me all the secrets at the facility.  (Really, they are her own made up secrets...but I'll never correct her on that. )

Something has happened in the last six months.  Jerry has "gone away".  He is not here anymore, even though he still taps me on the shoulder.  Honestly, he probably taps everyone on the shoulder who comes to give him a hug.  That's just the way he is.  But, as for me?  I'm another someone who loves him and who he loves back.  He loves them all and I'm no different.  It's ok though.  He's moved on.  I've accepted it.  It's taken 15 years to get to this place.  He's still my first love and my beloved Jerry and there will be no other like him, whether he knows me or not.  He's in a good place.  He's at peace.  I'm at peace knowing that.

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.

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!

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.

Striped Pumpkins - An Alzheimer Journey by Susan Scoggins

Striped pumpkins.  Today, it was my privilege to take my love for art to the assisted living facility where Jerry lives.  In the morning, I work with the residents in the Alzheimer unit.  In the afternoon, I work with the residents in the assisted living section. When I first began this endeavor, I didn’t know what to expect.  Honestly, I do not expect anything.  That’s exactly what makes the time so exciting.  If I had my own unrealistic, preconceived expectations I probably would get frustrated.  I mean when I brought in pumpkins to paint, one of the residents didn’t want to participate because “That’s not what you do with pumpkins.  That’s not even big enough to make a pie!”   I made light of the comment  and passed out a couple of pumpkins large and small.  These would be corporate pumpkins where all the residents would contribute their artistic skills.

Some of the residents can hardly hold a brush and if they can, they don’t know what to do with it.  But once, I got the brush loaded and placed in their hand, I moved it once or twice and away they went.  The session only lasted about 30 minutes...but it was 30 minutes of smiles.

These smiles may not be remembered for long, but it is the smile of the moment and the more moments of smiles we can have the better.