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! 

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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.  

 

 

Tailgating

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

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

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

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

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

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

Activity directors!  Thank you for all you do!

Those Vows

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

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

Very vintage!  Hippy days.   

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!

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

Loving Networks

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

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

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

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

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

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

There is no greater love than this.