A Difference in My Life - an Alzheimer Journey by Sue Scoggins

Today was an opportune day to visit with one of Jerry's staff.  

For those staffers who answer this call of service, I admire you.  It's such a thankless job and NOT a pretty job.  Many of you hold down two jobs and take care of your families...some are going to school.  I honestly don't know how you do it.    It is the utmost of compassion and service.  

I was at the end of a sweet time with Jerry, walking arm in arm and hugging.  He seemed happy.  As we walked, I noticed one of the staff setting the tables up in the dining room.  I love chatting with those beautiful people.  She greeted us with a warm smile as we entered the room.  I commented about Jerry's new haircut and how he was always such a heart throb and how I always had to keep him under guard.  I could tell he heard me because he smiled when I mentioned his "bedroom" eyes.  That, although he was a wild man in his youth, he always knew his limits because of his foundation in God.  He had a great respect for the elderly and such compassionate for the down trodden.....  a real softie. ..and when it came to protecting his family or protecting justice.... he was a roaring lion not to be crossed.   

I commented on how Jerry's skin was like a smooth baby's bottom today.  He does not have ONE wrinkle.  Not one!  Not even those little crows feet.  SO NOT FAIR!  Anyway, one comment led to another while we were talking about caring for Jerry's skin.  She mentioned how at the nursing home (her second job) she encourages people to moisturize and apply lotion to the skin of her patients.  She said, "Think about it, Miss Sue, we all put lotion on after we bathe.  Dry skin hurts."  For Jerry, applying Vasoline after he is shaved seems to help.

As she now began to sweep the floor, her eyes began to tear up as we continued to talk.  She mentioned one of her patients who passed away last week.  Against her better judgement, she had become so attached.  "Miss Sue.  So many family members do not come see their loved ones.  WE become their family."  She hears comments like, "Well, she doesn't even know me.  Why should I come?"  or "She never says anything.  I don't know what to say."  So the family members just quit coming.  She said, "I would just put lotion on her feet and legs and talk to her.  I was all she knew. I told her if she didn't want to get up and eat...it was ok.  She could just rest."  "Miss Sue, it just hurt so bad. I don't necessarily make a difference in their lives but....caring for these people....it just makes such a difference in my life."

Oh.  If we could all learn from this!  What a better world this would be.  For this staffer and many others, who's lives are impacted so deeply.  I thank you.  I thank you, from the bottom of my heart,  for how you care for Jerry.  I thank you for how you care for those who are alone.

Matthew 25:31-46

English Standard Version (ESV)

31 “When the Son of Man comes in his glory, and all the angels with him, then he will sit on his glorious throne.32 Before him will be gathered all the nations, and he will separate people one from another as a shepherd separates the sheep from the goats. 33 And he will place the sheep on his right, but the goats on the left. 34 Thenthe King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. 35 For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, 36 I was naked and you clothed me, I was sick and you visited me,I was in prison and you came to me.’ 37 Then the righteous will answer him, saying, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? 38 And when did we see you a stranger and welcome you, or naked and clothe you? 39 And when did we see you sick or in prison and visit you?’ 40 And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers,[a] you did it to me.’

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.










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!

Screen Shot 2013-10-21 at 7.18.33 AM.png

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!












I once heard a radio psychologist suggest that we should not write when we are fatigued, hungry, angry, (something else, I forgot). Well, .......

People have said that I will have extra jewels in my crown.  Don't know about the jewels in the crown...I don't want them.  It's getting too heavy.

There's a country band that comes to Jerry's place once a month.  It's Jerry's favorite ole timey country music.  After such a great "respite" I thought I'd go and dance with him tonight.  BAD IDEA!  He is so pitiful.  Don't know whether to be happy or sad.  When you see these beautiful people…besides the smell of urine, the food drippings on the top of the shoes, the bruises on their faces from falls, the glazed eyes…..what else can I say….I try to see what positive that I can.

Jerry is still beautifully handsome…very skinny…but handsome.  His eyes are still radiant blue…but they see far off in the distance and they are "wanting".  Tonight, he was completely unaware that I was sitting by him….I was sitting on the wrong side.  I should have been sitting on the left.  I am so grateful to these talented people who give of their time to bring these tunes to these forgotten folks.  There is a "mean" fiddler and a blind bass guitar player with a great sense of humor, the woman with a velvet voice and then there is the man that slides on his steel guitar. They smile bravely and joke but there is one singer who insists on playing the old woeful whining songs that bring the room to a downward spiral.  It takes two Orange Blossom Specials and a Good Ole Mountain Dew to get the hands clapping again.

Screen Shot 2013-02-12 at 10.00.37 PM

Screen Shot 2013-02-12 at 10.00.37 PM

Jerry was rather unresponsive tonight which brings me such sadness.  I think he was even hallucinating but I couldn't tell. There was no dancing. Oh how I wish I could hear a cohesive word come from his voice.  We held hands tonight...all four of them, his and mine.  His hands are so soft.  If there was anything that use to get a rise out of him…it was foot stomping country music.  When the Orange Blossom Special was over, he got so excited that he gingerly rose to his feet and walked to the front of the room amongst the singers.  He had no idea where he was going.  It was so pitifully sad but a smily type of sad.

Ok….now that you are probably crying.  I'll stop. I realize this is sad.  People say this is cathartic for me.  Yes, it is.  However, it is real and I am not the only person to experience this.  There are many.  We will cry.  We will be blessed.  We will be stronger in time.

Now, I think I'll go eat some toasted raisin bread with extra sugar on top....along with a gin and tonic..then go to bed.

Jerry’s Back - An Alzheimer Journey by Sue Scoggins

Jerry.  Two years ago dancing with Katie while we were still at home.  Jerry loves to dance. He rounded the corner from the back room and saw me standing at the nurses station.  In that second, he picked up his step.  My face lit up in a smile and I ran to hug and hold him.  He felt so soft in his yellow Nautica sweatshirt.  Like a bony pillow.

Our hospice social worker was there to pick up some paperwork.  I’ll miss her, but she reassured me, that if I ever felt Jerry was declining rapidly, not to hesitate to call her for a reevaluation.  The three of us walked back to Jerry’s room.  Jerry never let go of my hand and kept patting my shoulder.  He knew me today.  The social worker explained that the reason he did not recertify for hospice services was that, in spite of his mental decline, his physical decline was not declining enough.  Certain criteria have to be met.  His weight has stabilized and he is still ambulatory.  His vital signs are still good and there has been only one UTI.

Our visit was good, in fact, she asked me for insight in counseling people who’s spouses don’t recognize them.  How do I cope? I told her it was really heart wrenching, at first, when he began to not know me.  I told her that I missed him so much more and felt that if I visited more often, he’d remember me again.  It took a while for me to adjust, but now I make a joke of it.  I try to make it light and say things like, “Who do you think I am?  Your girlfriend?”  Or, “You just said you loved me.  Who’d you think you were saying that to?”  It usually gets a sheepish smile out of him and that is much more important than the fact that he doesn’t know me.

Today, however, we DID connect.  He looked so dad-gum handsome.  His hair is long, now, like a retired rock star.  It was clean and had a little curl on the ends.  It was a mild fall day and we spent our time sitting on the front porch with some of the other residents from the independent living section.  They all know Jerry and are so, so nice to him.  Next time, I told them, I’d bring some music so we can dance to Duke of Earl.  (That’s Jerry’s favorite oldie.)

Next up......Frank Sinatra and Bing Crosby.

We Have a New Roomie - An Alzheimer Journey by Sue Scoggins

It was Sunday and a beautiful fall day.  When I arrived at Jerry’s place, I could see him in the main room where most of the residents “rest” watching tv.  They were watching Andy Griffith.  I could see Jerry actually leaning forward and looking up, as if he was actually watching good ole Andy.  Some of the other residents expect their greeting hug when I walk in the room.  A squeeze makes their day.  Jerry didn’t exactly know who I was at first.  However, I took him by the hand and walked him down the hall to his room.  When I got there I noticed that there was a new bed, pictures on the wall, another lounge chair and a BIG tv.  He had a new roommate.

It was exciting.  It looked like his new roomie might be a good match.  Jerry and I walked on out to the front porch where I had noticed a group of folks sitting in rocking chairs.  What a beautiful family!  His new roomie, I’ll call him Roy, was sitting in a wheel chair next to his endearing daughter and her husband.  I could see the angst of this new transition by the red rimmed eyes.  But, we all stayed upbeat, talked about the country western band that comes once a month, and how Roy loves old movies.  I could see how Roy was trying to be brave......his face would begin to reveal his cry..... he wanted to go home. I’ve seen that face before...many times.  Yet, he knew he had to be brave for his family’s sake.  He was.  Jerry still is.

Jerry’s doggie, Montana, was waiting in the back of the car so we ventured over to give her a pat on the head.  The cool fall day made it possible for her to come for her doggie visit.  By this time, Jerry knew who we both were.  (I think.)  I put the leash around Jerry’s wrist and threaded it through her legs so she wouldn’t pull him and off we went to circle the parking lot.  As long as Jerry is able, we’ll  go for a “tour” around the area.  (This photo above was taken 4 years ago.)  Fresh air and outdoors is in short supply when you are in a locked memory care unit.  Not that they don’t do the their best to keep the resident’s active and get them out....still, it’s not the same as being able to get out whenever you want.  None of these alzheimer patients are able to do anything without assistance.  The residents up front in the assisted living section are able to sit out front whenever they want.  And they do!

Back at the unit, Roy was taking a nap, and the each family member was saying their goodbyes.   Sons, daughters, in-laws, and his granddaughter came out one by one.  All greeted Jerry with empathy and infectious smiles.  Jerry’s face  lit up with a smile as if he  belonged to them.   For them, it was a heavy hearted day but in their heavy hearted ness, they were able to be uplifting.   We’ll be in this together for a long time.  New friends.  A new roomie.  A gold nugget !

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.