Time to Let Go

Our Raleigh trip has been filled with emotion for me.  The other day, I took Jerry to his old daycare for about 4 hours so I could have some "girl time" with my daughters.  As we approached the church, where the daycare is housed, Jerry immediately recognized it.  He was not opposed.  The minute we walked in, we were greeted by his old “buddies”, Buck and Jerry.  Those little guys are the cutest things, about late 70’s and have been attending that day care for years.  It was like “old home week” for Jerry.  I was so relieved and for a fleeting couple of hours, I wondered if I should move back to Raleigh. I just couldn’t bear to think of Jerry sleeping all alone at night in a “home”.  It’s just not time.  It’s just not time.  Maybe the daycare option would work.  I even told my oldest daughter to look for a place for me to live.  The thought of moving back sends this huge feeling of suppression on my soul.  I cried out back and forth, "But Lord.  Please don’t make me move back here.”  “Ok.  I can do it.”  “I’ll do whatever I need to do to take care of Jerry.”   I even drove around wondering where in the world we would live.  The longer I drove, the more depressed  I got.   While Raleigh is a beautiful town, it is filled with trees.  The trees make me feel “down under” ...under a covering....I am an open sky kinda gal.  The town is filled with young moms and shopping and soccer games and kid life.  I’ve moved on from that.  I can’t go back.  Help!

My daughter wants me to live with her.....in an apartment in her backyard.  While that is the sweetest compliment....to be wanted by my daughters...I am way too independent for that.  I told her maybe I could do that when I’m 80.  Not 58.  I’ve still got a half century of living and self discovery and growing to do.

Back to Jerry.  Yesterday, while staying at Katie’s, she kept him while I spent a couple of hours delivering paintings.  When I returned, I could see that her spirits were down.  She was trying to be strong, but it was pretty obvious.  His decline brings  a whirlwind of emotions and Jerry has been at his worst.  Accept for his day at the daycare, he has been wandering, confused, clingy, very anxious, .....unable to speak.....you name it...even grumpy.

Last night we went to our grandson’s adorable Christmas sing-a-long, it hit me.  This may be Jerry’s last Christmas with the family.  This may be his last sing-a-long.  Then when I saw an old friend, we began sobbing beyond control....DAMN, THIS IS HARDER THAN I EVER IMAGINED.

Labor pains.  Labor pains.  ...and the contractions are getting harder.  While I briefly entertained the “day care” option, I think it would be totally insane to bring Jerry back here, just to keep him out of a facility.  It couldn’t be more than a couple of years away.  Then, as the days have continued here, I’ve come to the conclusion that I can not do this anymore.  I have become very fragile in my mental and emotional state.  I think I’ve finally accepted it.

So, I am committing myself to a time of prayer and listening for the next little while.  I realize that it’s time.  I’m almost relieved.  Maybe Jerry will be relieved.  Thus, begins the beginning a the new change.  I’ll keep you posted on our progress.

In Raleigh

On Saturday, we came up to Raleigh upon the request of my son-in-law.  He’s opening a new dental practice and is in the throws of last minute decisions.  It’s crunch time and the furnishings aren’t in yet and he’s still got lots to do.  I was privileged to be asked to help.  What fun...spending someone else’s money!  Besides, we get to hold baby Charlie, who has mastered the words “PAPA” when he sees Jerry. This week, we’ll get sitters.  One for the little kid and one for the big kid.  Actually, there is a really good day care up here.  I’ve broken the news, very gently, to Jerry that he gets to go visit his “ole” twin friends and help “volunteer”.  He seemed to be ok with it.  (Actually, I don’t think he knows what I was talking about.)  However, I plan to keep reminding him, gently again, that WE are going.  Once placed, my daughter and I will get to go office shopping.  What a blast!

Today, I’m delivering a couple of paintings to clients.  Yippi, again!  I feel like I’m being productive.  Ahhhhhh, it feels so good to be productive and growing.  I must admit that this little glimpse of normalcy is refreshing.  As a caregiver, I get so caught up in “caregiving” that I forget what it’s like to walk with vigor, breathe deep, and experience accomplishments.  Many times, the biggest accomplishment of the day is getting Jerry’s shirt buttoned.  Sometimes, I think it might be better for me to be in Raleigh.  Jerry would be in daycare and I would be able to bring a little bit of normalcy into my life.  That would mean saying goodbye to our friends in Emerald Isle.  Saying “good bye” ONCE AGAIN!

We’ll see what happens.  Only God knows.

Just Thinking

Believe it or not, I’m not writing this in some sort of emotional state of mind.  As a spouse of a dementia person, the financial responsibility rests on your shoulders.  There is no one to bounce ideas off of accept those who are solicited to advise. At 58 and 62, Jerry and I should be approaching our retirement years having done a lot of planning.  Jerry, being taken out of the game at the early age of 50, has not been able to bring in an income nor have I been able to, since I stay home to take care of him.  We didn’t fund our IRA’s for early, early, early retirement.  Plus, the economy didn’t help much with that either.

My entire life, I moved all over the world, having been raised as an Air Force brat.  When I married Jerry, I had no qualms about being the corporate wife, moving around to support him in climbing the corporate ladder.  I didn’t know any different.  After many years of marriage, however, I felt I never really had a place to call “home”.  “Home”  was where ever we hung our hats.   I never became attached to any house...and never really invested a lot of money in furnishing them.  They were always “a place to keep nice until it was time to sell.”

The dream of living at the beach was an unimaginable dream.  My heart and soul loves open skies and I am a kindred spirit with natural beauty.  I’ve never been a “groupie” or a "keep up the the Jone’s" type, nor really cared about excessive material things.  When Jerry became ill, we purged almost everything excessive and kept only the things  that were necessities and things that  had sentimental value.  We sold the house we were in and moved to a smaller one.  We had put all of our kids through college and gotten them all married off.  Once I quite my job, we were able to move to the beach.  No one cares what kind of house they live in.  It can be a mansion or a trailer, just as long as it’s in this beautiful carefree environment.  We’ve been here almost four years now and it finally is a place  I love and can call home.  We both love this place.

As you’ve read, however, this house has become a money pit.  A home at the beach takes a beating from the elements.  The maintenance is quite costly and Jerry cannot help...so it requires hiring someone.   We are hemorrhaging dollars.  Dollars that were planned for a long future or for the looming possibility of Jerry’s costly future care.  Now.....to sell this house in a bad economy is not such a good idea.  If I could just hold out 5 more years.  Or, maybe I should consider alternative financing plans; a reverse mortgage or something.  Or, maybe I should sell and take the cash....but then, where would we live?  Should that cash be saved for a facility someday?  Should I rent?   I always planned to keep Jerry with me and use hospice services.  But, this guy is probably going to outlive me.  What if that happens?  Everything we own is in my name.  Oh, if only I had a crystal ball.

Seriously, I am totally blessed to be where I am right now...healthy, a cool house, and I’m able to care for my hubby.   I decided a long time ago not to worry about what may never happen.  Peace only comes when I know I am where God wants me to be, abiding in HIM.  He loves Jerry even more than I do....and God has much more patience, too. Hmm.  I’m not going to panic but will pray for wisdom and a listening ear.

Aftermath

Well, didn’t  write yesterday because I was a little miffed.  The day with Rose went great.  Took her to her appointments, then, of course, we had to do a little shopping. Grammie’s got to give the babies something for Christmas, ya know.   I was nervous about being away from Jerry that long. When I called John, he said that they were doing fine.  They were watching an old WWII movie.  Since we were running a little late (4:00), Joe, Rose’s husband, said he’s take Jerry home with him, where we would meet and have dinner.  Jerry loves Joe and Joe is the miracle worker that is saving my retaining wall.  Joe’s been over at our house for two weeks now.  We all figured Jerry would be ok with that.  Joe was even going to take Montana.  WELL!  It didn’t work quite as planned.  When Joe got Jerry, Montana wouldn’t get in the car.  That made Jerry upset and worried and began a “grrr” cycle.   Joe put Montana back in the house, and they left.  When they got to their house, I was not there.  Ooooooo!  Mistake number two.  Jerry said, “Where’s Sue?”  Joe told him that we were at the grocery store getting food for dinner.  Jerry so sweetly responded, “BULL SHIT.”

Whoa!  Jerry hasn’t spouted out a cuss word since he was in his thirties.  Nor has Joe ever seen Jerry mad.  He tried to calm Jerry down, but Joe told me later that Jerry actually walked out the door and was “going home.”  Now, let me say that “home” is about 8 miles away.  It took a little coaxing but Joe got him back in the house.  Rose and I arrived a few minutes later and boy was Jerry mad.  He didn’t yell or anything, but his eyes could have burned a whole through a steel wall.  No matter how much Rose and I tried to “lovie” all over him....he was as cold as steel.  At me, of course.  Now, let me tell you something about myself.  I DON”T DO ANGER VERY WELL.  ESPECIALLY WHEN EVERYONE IS BENDING OVER BACKWARDS TO BE NICE.

Me, being human, after the lovie stuff didn’t work, just walked on over to help Joe peel potatoes.  In my snippy little voice, I said,  "Well, if you want to be mad....go ahead.”   Joe said.....”Now, come on, let’s be nice.  Let’s be nice.”  Anyway, after Joe got the dinner in the oven, he hopped on over to his sunroom and said, “Come on over here, let’s watch the sunset.”  IT WAS ABSOLUTELY GORGEOUS.  I tapped the cushion on the seat next to me and encouraged Jerry to sit by me.  He did.  We all got engrossed in the colors as they changed while the sun went down.  Whew!  Finally, he was beginning to calm down.  It was only his angst over Montana that remained.

Once we started eating, things were better.  I really enjoyed it.  These guys are funny and can lighten up my heart pretty easily.  Course, the aftermath was when we got home. That’s when it all came out.  Now, I didn’t fuss at Jerry at all.  Honest!  But, after I got him in bed, I went down stairs and balled my eyes out.  For the first time, I crawled into another bed.  I told myself I could do this anymore.  Still balling,  I got my computer and was going to start looking up resources again.  But, when I opened the lid to my computer,  up popped my screensaver that was a photo of Jerry and I leaning our heads together, happy, and smiling.  Whaaaaaaaaaaaaaaa!  Thus the night went on.

So, there ya have it.  The cycle of the Sue and Jerry once again.  It took a day for me to recover, but we’ve moved on.  Jerry’s still sleeping this morning, so I’m writing you.  It will be a good day.  Remember those morning mercies.

Bollywood

Dancing to Bollywood....that was me this morning.  Remember the belly dancing vision? Well, yesterday I was about to give up.  Jerry left but a migraine came.  (Thank goodness, for him, that he was spared.)  I spent the whole time, while he was gone, with a coverlet over my head.  I’ve not had migraines in years.  The last one sent me to the emergency room about 10 years ago.   I could feel it coming on for the past few days.  It hit yesterday.  Last night , I was about to throw in the towel.  AGAIN!  I can’t do this anymore!  We went to bed at 7:30!  I mean, Judge Judy hadn’t even given her verdict yet!  Poor Jerry.  What do I do?

BUT, you know those morning mercies!  I got up, feeling well rested but like I had been hit by a truck.  I went down stairs,  put Montana out and made the coffee.  When I came back up, I remembered that CORE exercise program.  I figured...”I WILL SURVIVE”...so I turned on FIT TV.  (By the way, I hate TV.)  The CORE program was just going off so all I did was  the stretching.  Tee!  Hee!  Then those Bollywood belly dancers came on.  I figured no one was looking, so I joined them.  I really liked it and all my muscles woke up....all that swaying, tapping, and shimmying.  I could feel the stress shimmying right out of my body.  It’s going to be good day... I just know it.  All I need now are my ankle bracelets and toe rings.

Today, I’m taking a friend of mine for some appointments.  She’s started having seizures and can’t drive.  Last night I broke the news to Jerry that John is coming.  He worried about it until we went to bed.  Jerry is getting very anxious again about us being apart.  He’s much more confused now and I think he realizes it at times.  It’s making him fearful that I won’t be able to handle it and that I will put him in a facility.  He’s scared to death of that.  Unfortunately, that may happen, but I hope not.  I just wish I could instill confidence in him that I’m here for him.  That might ease his anxiety and enable him to be less clingy.  This morning, I am going to give him  half of an anit-anxiety medication.  He’s exhibited some anti-John behaviors in the past....so I’m hoping this will help.  I’ve written a note to remind Jerry of what I am doing.  It reads, “I’m taking Rose to the doctor.”  I’m hoping with that little piece of paper, it will help him to relax.  He really likes Rose and would want me to help her.

So, on to the rest of the day.  Keep your fingers crossed.

Uneventful

Things have been pretty uneventful the past few days.  Of course, I say that, not even considering the fact that the workers bees are still swarming all over the house.  In fact, the kitchen is all sectioned off with plastic and the yard looks like a mine field.  We’ve had a steady flow of onlookers wondering what in the world has happened to our yard.  In fact, the sight of a couple of 8x8 beams holding up the side of the house, looks a little precarious. Like I said, things are pretty uneventful.  The reason I say that is because Jerry and I are both just wandering around the house waiting and watching.  Jerry’s been exhibiting a little frustration at my talking to all the worker men and he’s also getting a tad “grrred” when I tell him what to do.  But, what’s a girl suppose to do?  The fact that I was trying to keep him from going out of the house, when he was suppose to go upstairs and take a nap.....the fact that no one has came to take him out today....the fact, that I am preoccupied just a tad with the bulldozers, chains, and cracking lumber......these things don’t exactly make him happy.

My commissions are coming close to being finished.  Only have 2 more to do before Christmas.  For some reason, I’ve avoided the studio like the plague.  Just can’t seem to get myself in the “zone”.   Actually, I find it a little difficult to separate the patient and the painting.  He’d rather sit on the stairs and watch me paint  than sit in a chair and watch a movie. I’m sure he would be fine, but he’s just so restless.  OH, WHAT THE HECK!   I AM TOTALLY LYING!  Jerry has "left the building” and keeps babbling “phrases” to which I respond "What are you talking about?”  He’s like a walking suduko that I am trying to figure out.  The time change has also thrown him for a loop because it’s dark at 6:00 and he thinks it’s time for bed.

ANYWAY, I won’t bore you with any more trivial details.  We all have challenges and “IT”S NOT ALL ABOUT ME....OR JERRY.”   So, I’ll say “ta ta” for today.  Hope you are all getting “wrapped up” for Christmas.  HAHAHA!  Did you get that?

So Many Thoughts

You know this Alzheimer/dementia thing is so uncanny. This morning, we slept in a little.  The lazy, homebody, side of me said, “Awe.  We don’t need to go to  church.  Everyone will think we’re in Raleigh.  Jerry won’t even know.”  Then, the “do what is right” side of me said, “Jerry, today is Sunday.  Do you want to go to church.?”  From under the covers, he cheered, “Yeah!”  I new he’d say that!   Ok.  So I’ve always appreciated the fact that he gets me out of the house...even in the midst of dementia.  The morning went rather frustratingly.  (is there such a word?)  I started the shower and he put ON his clothes.  I took them off but he walked AWAY from the water.  After the shower, I handed him some nice corduroy pants and asked him to put them on.  They were HUGE.  He’s lost 30 pounds.  Off came the pants.  I handed him another pair that worked just fine.  Then, I handed him a beautiful blue starched shirt.  The shirt went on.  The pants came off.  "No!  Put the pants back on.”  I went back in the closet to figure out what I was going to wear.  I was afraid to leave him, because no telling what I would find when I returned.  When I returned, I found him with two shoes on and one sock.  “What are you doing, you silly thing?”  Take off your shoes.  You need two socks.  He started to take off his pants again.  “Jerry.  You are going to kill me.  Keep your pants on...here, let me take off your shoes.”  We got them off and I handed him a nice PAIR of socks.  Then, I went back into the closet.  When I returned, he had on two socks alright, but they were different socks.  Now...why did he do that?  Come to find out...one sock had a hole in it.  He knew enough that he didn’t want to wear the one with the hole in it...went and got another sock....put it on.

Needless to say, we didn’t make it to the service.  We were late, so I asked him if he wanted to go to the late service or to class.  I knew he would say class because it is smaller and intimate and all his friends make a big “to-do” over him.  (He’s a social guy, ya know.) Plus, the teacher is great and Jerry can actually follow him.  (sort of.)   Being the “recluse” that I am, I just wanted to be anonymous and go to the worship service.   He won.  I took him to class where he was greeted with smiles and hugs.  It perks him up like you wouldn’t believe.  He was right.  It was the best thing.

When we got home, we ate lunch that I picked up from the grocery store.  He picked out a chicken pot pie and I got him some side veggies.  I placed everything on a plate for him and had the extras set aside.  He ate from the “aside” plate.  Not the pot pie.  Ya know, he holds his fork different now.  He holds it between the tips of his thumb and his first finger.  There is no grip, therefore, the food falls off.  It takes him forever to eat.  That’s why he’s thin and I’m  not.

You know, he really knows a lot.  He knew he didn’t want “holy” socks.  Ha!  He knew the best place for us at church today.  He knows how to stay thin.

That’s enough random thoughts for the day.

If This Doesn’t Make You Laugh

NOTHING WILL. This morning, I did my usual snail like slugging out of bed, when Montana called at 6:30.  I’ve been slugging ever since I quit  exercising 6 months ago.  Remember when I was raving over Zumba?  That seems like a century ago.  Since then, I’ve fallen off the wagon.....BAD.

We caregivers have GOT to exercise....to survive. Without exercise, comes low energy, then depression, then we begin to circle .....THE DRAIN.   For 6 months, now, I’ve not lifted a weight any heavier than my own, nor walked any further than a mile....and that was just for the dog’s sake.  My mental status and my body status has fallen to an all time LOW (not in pounds) but in energy.  The longer I stay immobile, the slower I go.

Well, this morning....I turned on FIT TV.  Yep.  You got it!  Playing, was a CORE exercise regimen.  It really didn’t look too bad so I joined in.  Before I knew it I was into the belly dancing segment.  GET THE VISION!!!!!  Me, an elderly, at 7am,  rolling hips and swaying sultry arms.  All I needed were my little cymbals and dangling jewels.  Then, I took a sweep to the side and saw myself in the mirror and couldn’t stop laughing!  I was laughing all alone!  Out loud!

Oh.  Here comes TOTAL BODY SCULPT.  I think my studio is calling.

Thanksgiving

Here’s another one of those Thanksgiving messages.  Yeah, yeah, yeah.... In the midst of the serious illness experience, there truly is so much to be thankful for.  Facing the reality of life’s fragility brings a complete new view of it.  No longer is life to be taken lightly or taken for granted.  In a way, this is an “opportunity”.... a gift. ..a chance at living life to it’s fullest and making it count.  No longer are petty little annoyances very important.  It is now on to the  gift of LIVING.

This week, all the construction has begun in this house.  Remember the storm that caused our retaining wall to fail and the ceilings to leak?   We’ve got worker bees swarming all over the place, inside and out.  Windows are being replaced, therefore there are huge “holes” in the sides of the house.  There are excavators and front end loaders in the front yard.  There are pallets  of 8x8 pilings laying across our driveway and the front yard has now been torn up with treads from the tractors.  Along the side of the house is a giant PIT where trees have been removed,  rotten walls have been torn down, and loads or dirt are being poured in.  WHAT A MESS!

This is just a reminder that cleaning out the rot in our lives can be pretty ugly.  But, once it is done, it will be  good.

I am so thankful that people have come to our aide.  Joe, who is rebuilding the wall, has gone to battle with the environmental kings and pleaded my case before them...that if they don’t let us encroach on those wetlands, my house will be in the middle of it and I will then be the proud owner of the leaning tower of Chrissie Wright Court.  He fought for me and won. He’s got volunteers to help and the project is well underway.   Ron, a contractor, who has come to my aide many times when my house was in disrepair, has become the overseer of the inside of this humble abode.  He is trustworthy, does a good job,  and I can rest in that.

That’s a relief!  My job is just to get Jerry away from the house so it can alleviate his confusion.

A group of “BFFs” (best friends forever) bring dinner over on Monday nights, since I can’t get out much.  It’s a great excuse for a girls night out...works for me!  Jerry is surrounded by his many girlfriends.  (every man’s dream).  Every one of them has known someone with Alzheimer disease, so they are attentive and nurturing to him.  Their hugs always make him smile.

Again,  I can not get over the goodness in people.  It’s humbling that we are the recipients of such selflessness.  It inspires the heart to “pay it forward”.  I thank you for reading and keeping this blog going.      Have a Happy Thanksgiving.  Now, let’s go give and LIVE.....and eat turkey.

Daughters and Daddies

Daddies are a huge influence on their daughters.  The value that Jerry placed on his girls, I believe, contributed  to their self worth.  He was an honorable man and they married honorable men  as well.  My girls always have had a very close relationship with their dad.  Yesterday, during church, we sat Jerry in between Amanda and I.  As the music played I saw Amanda reach over and hold her daddy’s hand.  It was his right hand, the one that doesn’t work.  I watched as she sang.  I also watched as Jerry’s big blues searched the screen for the words to sing, yet couldn’t find them.  His heart and mind were filled with song, though, as the orchestra played.  Holding Jerry’s hand, Amanda said, “it trembles”. Amanda is our oldest daughter and when she was a little girl, she adored her dad.  He was a tall, handsome, business man who took care of his family.  He was her hero.  When she got old enough, around five, he took her to work with him to  call on some of his clients.  The story I heard from that day, was that she got left behind in the elevator.  Funny!  When she was around 14, she spent two weeks working  in Jerry’s office.  Amanda was an avid reader, had a good head on her shoulders and was very articulate in engaging with adults.  She and Jerry would spend hours talking about history and politics.

When Jerry, first, became ill, Amanda didn’t know how to handle it.  (none of us did.)  My particular coping skill is to face it head on and dive into research and training. Grab the bull by the horns, so to speak.   Her’s was anger and denial.  I remember asking her to attend a play about someone with Alzheimer disease.  She wouldn’t go.  We all handle grief in such different ways and we all are entitled to process grief without judgement from others.  I understand that now.

Since we live 2 hours away, the girls only see their dad about once a month.  It actually works out pretty good because they are not involved in the daily caregiving, but they are close enough to still be a part of each other’s lives as we all travel this journey together.  Those precious moments, the holding of the hand, the sharing of a parade, the grandson in the lap...all are moments not to be missed.  Jerry still continues to be a positive influence on our children as he faces this disease. Even though much of the time, he doesn’t realize there is anything wrong with him, there are still many moments when he realizes that he is sick.  Those moments are the brave ones.  Yet, he handles them with courage and in a heroic way.

He is still a hero to her.

Perfect Weekend

We spent the weekend up in Raleigh with our kids.  It was a last minute “jump into the car” ride when we found out our grandson and his dad were going to be  in the Thanksgiving parade.  The day was cool and crisp; and the trees were all decked out in their hues of yellows, oranges and reds. Our daughter had her two little ones and I had my big one.  Things got just a tad challenging when the little ones and the big one trailed behind as we wove through the crowds.  Jerry kept trying to squeeze between a wall and a light pole with a folding chair strapped on his back.  He just couldn’t figure out why he couldn’t get through, nor how to solve the problem.  After a few attempts and a line of people waiting to get through, we managed to put down all the gear and get the chair off his back and lead him on through the crowd.  Once there, we were all delighted to see miles of high school bands, clowns, and horse brigades carrying flags.  Jerry got all teary and sentimental and, as long as he could keep his hand on me, he loved it.

Sunday morning we visited our old church.  We snuck  down one of the side aisles and sat up front where we always use to sit.   His decline was pretty obvious, I’m sure, as we struggled to get him to a seat.   There are 18 years of memories in that church so it’s  always an emotional day when we go.  Our old pastor, who was a kindred spirit of Jerry’s for years, caught a glimpse of Jerry and they both broke into a huge smile.  But,  as the service went on,  I was reminded of the fact that there is nothing more wonderful than worshipping and experiencing the peace that comes from it.  It makes me realize that it doesn’t matter where I live or where I am in life or what road I am on; the only thing that really matters to me is that I am in the presence of God.  It’s the peace that is beyond understanding.

Must Say..

John came yesterday and Jerry did really well.  You know...these dementia people...they do have more inside that head than we give them credit for.  Jerry knew that he had been a “pill” the week before.  Believe me, all week long, I kept coaching him to “be nice” to John.  He would say, “I can do better.”  So, better he did.  Before John was to arrive, Jerry kept looking out the window and pacing, waiting for him to come.  I knew he wanted to make amends. I know Jerry’s heart.  It is good.  His eyes say how deep and compassionate he is.  Yet, his mind, sometimes doesn’t let him be that person.  At times, he’s still a manipulative little thing.  At times, he can’t get up or down the stairs.  But, other times, he knows just what he’s doing.  Like, last night after he ate.  He took his plate into the kitchen, rinsed it off and placed it on the counter. I can’t figure it out.  I just roll with it.

While Jerry was out, my friend, Shannon, came over.  Shannon is my little friend who’s been battling breast cancer.  Just an update.  Her cancer is gone!  She has had two surgeries, completed her chemo, lost all her gorgeous locks of chestnut hair, her eyelashes and eye brows, and is now about to complete her radiation treatments.  I am so happy to say that her courageous battle has been a wonderful testimony.  She is truly an amazing young woman with a beautiful spirit.

Yesterday was her 39th birthday !  Her fuzzy little head feels just like a new puppy.  Her eyebrows and eyelashes are back and now, she’s ready to paint! She “thinks” I can teach her.  Ha!  Anyway, we painted all day.  Oh, what comfort.  What delight.  There’s nothing like painting to allow for “soul” talk.  Sometimes, there’s silence.  Sometimes, there’s spiritual talk.  Sometimes, there’s singing.  Sometimes, there’s dancing.  (with brush in hand, of course.)

Towards the end, Jerry came home and I introduced him to Shannon, AGAIN.  He saw her tiny little self and her bald head, and took her hand.  Her smile radiated genuine happiness to meet him.  His eyes radiated compassion.  It was LOVE at first sight.

A Little Chuckle

Today, I gave Robert a grocery list.  Figure that would give he and Jerry something to do while they were out.  Besides...I hate to go grocery shopping.  Hate to see the bill.  So, figured it would be less painful if they went, they paid, and I would just see the $$ come out of my bank account.  I had about 20 things on the list.  Speghetti, cascade, coffee creamer, Gatorade,  salt, pepper, rice...and so on. When Robert came back. we stood out on the driveway and talked for a while.  We’d hand Jerry a bag of groceries and direct him to take it upstairs.  One by one, Jerry would take the bags upstairs, disappear, then come back down again.  After, about 15 minutes of chatter, Robert left.   Jerry and I walked upstairs and into the foyer.  There before my eyes were all the groceries.  Each item placed  carefully on the floor in the foyer.   It was so cute.

Back Again

Yes, we are both still living after Friday’s bad day.  Was it the 13th or something?     Friends  have said that I was blessed with a long fuse...meaning that it takes a long time for me to come to the point of a melt down.  But melt downs reduce me to the point of total surrender and it takes a couple of days to regain my emotional and mental energy.  Saturday, I took Jerry to New Bern to pick up a large canvas.  I felt it was important to reassure him that things were fine.  So, I employed him as my canvas carrier and he liked that.  Then, I braved it and I found a quiet “out of the way” table at a nice restaurant for lunch.  (there weren’t any cheese spreaders anywhere around.)  The rest of the weekend was REALLY low key.  ALAS, it’s Monday and  we’re back in our routine again.

Just wanted to you see the rest of the cows.    These cows don’t have a care in the world; romping around on the open range. The process begins with a rough underpainting .  No drawing.  Just sketching with paint....over and over and over and over until it’s finished.  Sounds like a day in the life of a caregiver.

Honoring Him

I have to apologize for my meltdown.   Usually, I put a post of piece of artwork as a coping skill during this dreadful disease.  Sometimes, when I am frustrated at the way things “are”, it helps for me to remember they way things “were”.  That’s why I have pictures of Jerry around the house...so I remember who he use to be.

After the reception fiasco, I feel this need to show the world who my wonderful Jerry was.  Here’s a photo of he and my son at my daughter’s wedding.  This was shortly after Jerry was diagnosed.  He was wonderful.  I’m sorry, Jerry.

The Last Straw

This blog is suppose to be an honest respresentation of life as a caregiver of a beloved dementia victim.  Many times, I gloss over a lot of episodes. Tonight is the last time, I’m taking Jerry to a social function.  Many may say, “well, why did she take him, anyway?”  Well, it was an art reception for a friend of mine.  These friends all know Jerry and our situation.  We all try to support each other and attend each other’s receptions.

Today has been one of those days where I’ve had to walk on eggshells.  John came.  John’s been a big help to me around the house and he absolutely loves Montana but Jerry’s reaction to him has not exactly been positive lately. Possibly he thinks John is trying to come in a take over....even his dog!  John and I were constantly trying to build him up  in hopes of winning his approval.  No matter how much we tried, Jerry continued to be a “PIB” (short for pain in the butt)  with his attitude and body language.   So we decided to cut it short.

Needless to say, I was a little peeved at Jerry.  I walked him upstairs and got him to take his nap.  (under duress.) ONE HOUR LATER...he came out.

Tonight was the straw that broke the camel’s back.  I took Jerry with me to the reception.  I fixed Jerry a small plate of appetizers and sat him in a nice comfy chair off to the side.  With one eye on Jerry, I tied to carry on some type of conversation with the attendees about the wonderful artwork on display.  I glanced over and saw the UNPARDONABLE SIN!  There was Jerry at the “trough”, with the cheese spreader in this mouth.  I dearly died with embarassment and wanted to crumble in a million pieces.  Then, I wanted to jump off a bridge.  Then, I wanted to pretend I didn’t know him.  THEN, I TOOK THE KNIFE AND WASHED IT.  AND LEFT!

I cried all the way home.  Jerry was completely oblivious to what he had done.  He didn’t understand, AT ALL, why I was upset.  That made it even worse!

There’s no arguing with a dementia person.  Their perception is what is right in their eyes and there is no changing it or rationalizing it or trying to explain your point of view.  It is what it is!  More days like this and I might have to quit.

I’m going to bed now.

Dementia 201

Now that you’ve gotten over the initial shock of the diagnosis.  (Do you ever get over it?)  Resolved that we would life “IN SPITE” of this disease and not “IN” the disease, we did our best to maintain our same social life and activities.  They just needed to be tweaked them a little.  SIMPLIFY!  SIMPLIFY!  SIMPLIFY! There was a “can do” list for Jerry.  Since “they” say that we must continue to use our minds and that dementia people need to continue to be as independant as possible, I refrained from catering to him too much at the beginning.  We continued life as normal as possible.  Ate out.  Traveled.  At home, while I was at work, I had a list of things for Jerry to complete while I was gone.

1. Fold laundry.  He can still (12 years later) do that.

2. Do puzzles, word searches, geometric art.  The puzzles were pretty simple.  One, in particular, he really liked.  It was a map of the United States. Since we travelled so much and he had flown everywhere (in the world, it seemed) he had visited every state. It was  VERY SIMPLE;  large pieces for ages 7-9.  When I would come home from work, he felt like he had accomplished something.  He was able to do these things for about 6 years.  Now, we’ve put the puzzles away.

3.  Help clean the kitchen.  Put the dishes in the dishwasher.  (good sorting skills)  Now, he can at least put his plate on the counter.

4.  He continued to play golf, even when he couldn’t play golf.  His buddies would fudge......QUITE A BIT.  This was a “godsend”.  He played for years.  Now, he’s been “icsnayed”.  No one will even take him out, accept for his faithful friend, Bruce, who picks out his club and points him in the right direction.  His swing is natural, so it doesn’t take much thought to connect with the ball.

As Jerry began to get more confused, things needed to be simplified even more for him.  When we ate out....we ate early and in less crowded restaurants.  We reduced our social get togethers to a party of 4-6...no more than 8.  I found that conversations would continue without him, leaving him isolated.  He would even retreat as the night went on.  So the smaller, more intimate, the group the better.  Jerry responded much better when the people actually engaged in a conversation with him...not around him.  I placed him in the center of the group at a table...not on the end where he would be left out.

Nap time was very important.  Even if Jerry could ramp himself up to do an activity, he had no stamina.  He would not be able to persevere for very long, so naps would help recharge his brain.  In the beginning, I found that he would watch TV  for hours upon end.  Boo!  So I always tried to schedule something outside, with TV as his rest time.  Now, I wish he would sit long enough to watch TV.  (Be careful what you wish for.)  The only thing that keeps him in one spot is football.  Go figure!

That’s enough for today.  Will continue with dementia 202 next week.

The Safe Zone-A False Sense of Sanity

Jerry’s mother, bless her heart, is 90 years old and has been in a nursing home in Mississippi for 3 years. Up until this year, I’ve been able to take Jerry to visit her several times a year, but this year we haven’t gone one time.  I feel so bad about it.  You see, as a caregiver, not only do you get to handle your own sense of obligation, but you have to shoulder your loved one’s obligations.  Jerry’s brother, who I’ve dubbed a saint, has cared for her for years and years.  The times we traveled there, would be to allow Jerry to spend time with his mom and also give his brother some much needed respite. Jerry dearly loves his mother.  Four years ago, Jerry and I took a cross country road trip.  It took almost a month and it was our last.  On the way back, we stopped in Mississippi to spend time with his mom.  This was while she was still at home.  I vividly remember, Jerry’s anticipation, as I drove up the driveway.  When we approached, I saw his mom, with her frail body, shuffle out the front door.  I watched as this big ole 6’4” vulnerable man, gently took his tiny mother  in his arms and said, “Mama.”  (It makes me cry.)

It’s been over one year now and we haven’t made the trip.  Jerry is aware that his mother is still alive.  Occasionally, he says, “I need to see my mom” (In broken Alzheimer talk.)  “She must be dead.”  I reassure him that she is  still living and that his brother is taking care of her.  We call and his brother puts the phone to her ear and we carry on a silent conversation.  She can’t talk either.  I hate it...hate it that I haven’t taken him.  Maybe she needs to see her baby boy, even if just for a second.

Here’s the deal.  When we stay in our safe zone, I can be lulled into this false sense of sanity.  Now that I’ve finally gotten it into my head that Jerry’s surroundings must remain consistent, I start to think he’s doing better.  In fact, improving.   We connect.  I say to myself, “Hey.  I can handle this.”   So I think, maybe, I can take him on a little road trip back to see his mom.

It doesn’t take much for me to realize that this false sense of sanity is truly that....a FALSE SENSE OF SANITY.  Out of the safe zone.  Out of the mind.  You see, that’s what Alhzeimer disease does.  It’s makes the caregiver wonder who’s the one insane.  Me?  Him?  He?  I?  Maybe he’s fine.  Maybe I’m the crazy one.  Anyway, as soon as  I have company over for dinner or bring Jerry along for lunch with a friend,  it becomes clear that  Jerry is NOT better.  The slightest deviation or outside influence reminds me that he is NOT fine...he cannot connect.  I honestly don’t know if he can handle a 2 day road trip or not.  Actually, I don’t know if I can handle a 2 day road trip or not.  But I feel I should.

To go or not to go.  That is the question.

Finished the cows.

Dementia 102

In the beginning.... To those of you who are just entering into this journey....while you are in your frantic search for knowledge stage....I’d like to recommend a few pieces of reading material.

36 Hour Day - Nancy Mace and Peter Rabins

My Journey into Alzheimer’s Disease - A true story by Robert Davis

Seven Stages of Grief - Elizabeth Kubler-Ross

Still Alice - Lisa Genova

Alzheimer Action Plan - P. Murali Doraiswamy M.D., Lisa Gwyther M.S.W. and Tina Adler

Then, after you are completely saturated with knowledge until you can’t read anymore.   Sob!   Then get out your Bible because this is much greater than you.

Been Paintin"

Meet Molly and Molly’s parents.  This is the underpainting and sketch in acrylic.  I’ll lay in the oils once the underpainting is completed.  They are going in someone’s family room when they are finished.  Moo!  They are a work in progress.  (Aren’t we all!)  It’s mind boggling to me how several commissions have come in during the last two weeks. (Since the fall of the wall.)  OUT OF THE BLUE.  Seven new painting requests; some very, very large.  Some small.  It’s exhilarating and I’m speechless.  I really want to jump up and down with glee. DANCE  like those little “Glee” dancers.....SING like those little “Glee” singers!  In fact, I feel myself getting all giddy right now.  Can you feel it?

Things are working out pretty well with all of the day helpers that are coming.  It took quite a while (years) to find the right ones who “clicked” with Jerry.  Now, I have a couple of hours of respite every day.  (Accept Saturday and Sunday.  That’s when recorded football games come in handy.)  I can’t tell you how “normal” I’m beginning to feel.  It’s the first time, I’ve  felt comfortable that Jerry is happy and not feeling like he’s being shoved aside.  Every helper brings their own special uniqueness to the table and Jerry is becoming more and more attached to each one.  The newest, Sarah, is so sweet and gentle.  She’s the only female in the bunch.  Her upbeat but quiet, laid back style, makes Jerry feel relaxed.  I detect a little “stress free” feeling that comes from him because he doesn’t feel like he has to perform.  She pushes gently.  The guys all have their ways of challenging Jerry, but in a manly yet compassionate way.

Respite, although, I resisted it for a long time, brings a completely new attitude  to the game.  I suppose like a football player who needs to rest on the bench for a little while, so he can regain his strength to complete the game.  I resisted it, because I thought I could do it myself. I wanted to play the whole game.  After YEARS, 8, in fact, I realized I couldn’t do it anymore.  I had three options:  1.  Run away to a Greek Island.  2.  Finding a bridge to jump off of.  3.  Getting help.   Although the Greek Island idea sounded like the best option, I figured my kids wouldn’t appreciate it.  The bridge idea...might hurt...and still, my kids wouldn’t appreciate it.  So....looks like option three was the one I had to go with.

Since I was choosing option three, I had to figure out how to pay for it.  Heaven’s forbid that health insurance would help.  Oh no!  Grrr!  Giving up control of that, I figured I’d better paint!  I paint and have faith that someone will buy.  So far, like I said, “It’s mind boggling.”  Hey, I’ll paint for you.  $200 or $2000.  I’ll do it.  It’s a win win.  And a win for Jerry, too.