"I Need Thee Every Hour"

No matter the circumstances Lord.

No matter how hard it gets...

No matter what trials may come...

No matter what I may not understand....

I will trust you.

I need Thee every hour.

I do.  

Not every month, or week, but every hour even....

Let me find joy where you are.

Let me weep as you do when I need to.

Let me most importantly continue to love as You have.

Let me abide with you,  

Only then will I know everything will be alright. 

~Judith Poston Crovi

Bittersweet

It's almost Thanksgiving.  It is our year of "firsts" since Mom has passed away.   

I'm at the bittersweet parts of life lately, where it hurts in different parts of my heart due to grief,  yet wonderful memories make me smile all in the same heartbeat.  I'm so grateful for what I've had in a loving mother and the legacy both of my parents have left me.  Over the past 2 and a half years I've been grieving their loss of independence and health declines, but mainly it's been my Dad whom I have grieved.  Alzheimer's has been one rough, sad, unpredictable and winding road.  My focus recently changed with the loss of Mom.  So  mostly I've been grieving and mourning her.   Today I did think of Mom.  I've been thinking of her a lot this past week.  However,  that all too familiar grief of watching the dad I've always known slip away before us, is with me again.  I don't think it ever really left me.  Alzheimer's is not going away.  It is here to stay.  It is my daddy's story.  The disease is only headed one direction.....the direction of taking completely over my daddy's life with loss of his ability to function in every way you can imagine.  It's gradual.  It's unpredictable.  It's heart wrenching.  Yet I love this man so much.  I LOVE being with my dad.  His joy brings me joy.  It's joy and sadness all mixed into one.  Hard to describe except to say, "bittersweet".

Here we are the day before my birthday last year.  

Family Thanksgiving Celebration in Dad's building.  We brought Mom over from skilled nursing and had a wonderful time!

This is us this year during today's celebration.....

This bittersweetness  is two fold this year.....(the tears for me and the joy that remains).... We. miss. Mom. so. much.  We are also one more year deeper into Alzheimer's Disease for Dad and it is beginning to show more and more.
  
He's been stable for a good while.  There has always been confusion, anxiety and paranoia at times.  Confusion about "What do I do now?" or "Where am I supposed to be now?"  Not remembering if he ate a meal or thinking he never gets to eat.  There is lots of reassurance going on these days at this stage of dementia.  He is surrounded by loving, caring staff.  We're getting to know them better and better now, since Dad has been in Memory Care for over a year now.   

I know he is safe.
I know he is in a good place.
Sometimes I still wish he could live with us, so he'd be around family all the time and know we haven't "disappeared" somewhere.  I want to give him a hug 10 times a day, or just put my hand on his shoulder and say, "It's ok Daddy.  We're here.  What can I do for you right now?"  
But I know that is not possible....that hurts that I can't be everything he needs.  We do all we can, when we can.
He is in the best place possible though for what he medically requires.

Today was so bittersweet for me when I see Dad having an especially "not so good" day with his illness.  Two weeks ago we had what I am seeing now was one of his "great" days.  He was laughing and joking with Tom.  

He knew exactly who we were.  We had fun just talking with him as he could joke a bit too.  

He was still confused, and his language was lacking, but he was communicating pretty well.  He was stuck on one thought which turned out to be a bit comical.  He thought that his walker needed gasoline.  He was so concerned about getting some "gas" for it that he would not let it go!  Tom was awesome about telling him that his walker didn't need gasoline to run, that he (Dad) pushed it.  It was run on muscle power, namely "his" and he'd never ever need gas for it.  This was done in a loving way.  There was no argument or "I'm right and you're wrong" scenario.  It was gentle, joyful reassurance.  

It's hard to imagine what is going through Dad's mind these days.  What was making him think so much about putting gas in his car/walker?  Was it watching the news with the headlines of hurricane Sandy and people lining up at the gas pump in NJ?  Was it a memory of getting gas for his prior vehicles?  He never let his tank get below half!  Is he remembering his car he used to drive and wondering where it is all of a sudden?

I don't know.
I have no idea.

I just know he was able to joke about simple things and was loving his coffee that Tom got for him.  He talked about how good it was. How he liked it "sweet".  We kept asking if it was sweet enough.  He said, "Almost."  That was his way of joking.  How I love to hear him joke!

The "happy mood" is who Dad is.  He has always been the "happy go lucky" smiling, fun person.  

The "big kid".... 

The person who is the first to set you at ease with a funny yet gracious comment.  The person who makes you feel good about yourself and tells you "you can do it!"  The person who never gives up!  So much about my dad is overshadowed with this disease.  I get glimpses now and am reminded today that who Dad is, is fleeting before me.  Most of the time the staff says he's in a good mood and doing fine.  I wish I knew which was more the norm the "really good days" or the "not so good ones".  I have a feeling it is somewhere in between. 

Just a couple of months ago, I ran into Nancy, a member of Dad's high school class at Central High (1950).  She asked about Dad and said, "We always enjoyed being with your mom and dad at the class luncheons in years past.  Please tell Joe hello from me."  I told her I would.  Then she added, "In high school your dad was such a fun person!"  I bet he was!  I would have LOVED to have had a glimpse of Daddy at age 18.  

Dad and Mom used to go to the lunches every single month.  They hardly missed a one because it was so enjoyable and Dad loved being around people.  It was always his element.  Now a days, his dementia makes him dislike crowds, noise and lots of people more than anything.  They actually prepared a table for us upstairs in Dad's regular dining room for the Thanksgiving feast today.  It was very quiet and intimate compared to the loud and busy feast going on downstairs for families and residents.  They really do make accommodations for residents.  I was thankful Dad had a quiet lunch with us.

It was still a "not so good day" for Dad with his illness.  When we walked in, Dad was sitting at the dining table all by himself.  It was set for 6 and he was waiting for us to arrive.  He had a big frown on his face.  When he sees us, he usually lights up so quickly with that beautiful smile of his.  He did not today.  Something was troubling him.  It was hard for him to express himself so as to describe what he was feeling.  His language was not good today.  It was 50% incomprehensible, 50% understood.  Not the norm that I have seen for months.  He does have trouble getting out words.  He will substitute words or makes up his own words, when he can't find the one he wants.  Usually we can understand what he is trying to say.  Today was much harder to do that.  

It didn't happen just once either.  It was most of the time we were there.
He did start smiling when the food came out.   He also was excited to see Mike!!  He lit up when he saw my husband. "Mike!"  Mike does not get to see Dad very often.  He was saying his name today and he just looked at him and grinned across the table. It was like, "Mike, is here.  He's someone special."  He's always thought the world of Mike.  I'm just thankful for that connection today!

Dad didn't say my name today nor Tom's that I heard.  He knew the boys were his family.  

We told him who we were today.  His smiles stayed until we left.  Yet there was more of that "blank stare" on his face than normal.  Very much like a fog.  I don't like that blank stare because I know this is where we are headed.  He was tracking us with his eyes though and following our voices and turning towards our voices when we talked to him.  I am wondering about his peripheral vision now. 

Whenever we leave to go home, confusion sets in.  He wants to go with us. Where ever we are he wants to be.  He doubts where he lives now (though he's been there for over a year).  He thinks he doesn't have a home at times or thinks "home" is where we are.  More gentle reassurance and lots of times a loving staff member has to help us when this happens.  

I never tell him "Good bye".  I always tell him, "I'll see you soon. I'll see you later.  I'll be back...."  

This is the bittersweet part because I want him to come with us!!
I just know he can't.

He didn't joke a lot today.  He wasn't getting Mike's jokes.  He was  under this cloud of confusion.  Two weeks ago was different and that morning with Tom and I might be what "good" days look like now.  

Alzheimer's is just so unpredictable day to day.  It ebbs and flows as the disease progresses.  It's always been that way, but when you get to the stage that he is, the ebbing and flowing seems more pronounced.   I have been mourning Mom.  Now today I miss my Dad so much.  I don't like seeing him like this.  I'm so happy he's still in my life, but what he's going through is tough.  So tough at times.  I saw a son with his mother today also.  He was going through something similar with his Mom.  He was having a hard time trying to understand what she wanted to do.  Did she want to sit down?  Did she want to go for a walk?  He was there with her and was so gentle and loving.  Just like us today.  So many stories of families going through the same thing right there in his building.  Everyone with different struggles living the best they can with their illness.  I hear the love in family member's voices as they engage their loved one in conversation or kiss them goodbye. I see the ones with no family there too.  It really does break my heart.

Time will tell how Dad progresses with this disease.  

I do know Mom would have made things better today for him.  Everything was always brighter when they were together.  No one reassured him with just their presence more than she did.  No one.  I will share this funny and awesome picture of he and Mom last year at the Thanksgiving feast.  Dad was always "looking" at Mom when she didn't know it.  She would be oblivious to his gaze as we would snap the photo.  This is a perfect example....  Thanks Tom, this photo will always make me smile!

Oh I love that photo!  Priceless!

I miss them being together so very much.  It's like there is no "Joe" without "Ethel".  No "Ethel" without "Joe".  They just go together in the same sentence.  They were always together.  

Dad is still with us.  He is still "Joe".  He just doesn't have the blessing of his bride in his weekly life reassuring him during this time of Alzheimer's.  I don't know what it is like to lose a spouse.  I can't imagine what that would be like, though I have heard stories of grief of people who have lost their spouses.  What I wonder even more, is what is it like for the person with dementia, who has lost their spouse?  We don't know what they are thinking or feeling most of the time.  What is grief truly like for them on the inside?

Dad without Mom now.... the new normal.  I don't know when I'll ever get used to that.  Honestly, I don't.   He may not mention her name even after 4 months or remember when she died, but I do think he is still affected by her absence.  How could he not be?  You show him a picture, he knows exactly who she is.

His beloved bride.....  She used to tell him, "I'll love you forever....and ever."  And she does and she will.... they'll be together again one day.  The next time though they'll see each other as God always intended for them to be.  Fully healed.  No cancer.  No diabetes.  No insulin shots.  No dementia.  

We'll continue walking beside him.  We'll take the good days and the bad days.  We'll take them all!  No matter how many bittersweet days come our way.  I know with all my heart, that God's love is bigger than this disease.  Love propels us on.  

I wish more than anything that this were not Dad's story, but it is.  

Thursday, Lord willing, we hope to bring Dad over to our house for Thanksgiving Day lunch.  He and Mom were actually here last Thanksgiving.  Tom cooked a yummy feast for us!  I'm praying it will be a "good" day.  He loves going places with us.  I know he'd love to be here.  I also don't know if it will be the last Thanksgiving he can come to our house due to his illness.  No one can predict what life will be like one year from now.  A lot can happen with Alzheimer's in one year.  A lot can happen in a year when you are 80 years old without Alzheimer's!  I can't even look that far ahead.  I can only look at the day before me most of the time.  It has to be a "good" day though for him to make the trip across town.  If it is too much for him to come, then we'll go there.  Either way, we'll be together!

The Gratitude Box

Thanksgiving is fast approaching.... so many things for which to be thankful!  Today I decided to get out our gratitude box from last year and start working on updating it for this year.   

The idea came from the children's ministry at our church last year and I liked it so much that we decided to make one out of shoebox last year.  
Today seems like the perfect time, the day after the presidential election and elections all over the country (with all of the concerns on both sides of the political aisle), for focusing on thankfulness.  It might be just what we need to remember most.  Thankfulness in light of what is truly important in our lives.  

So we got started.... I got out the construction paper and we started drawing leaves to cut out.  On the back of those leaves we'll write things for which we are thankful and drop them in the box each week.  It doesn't have to be a specific day or a specific number of leaves.  Just whenever any of us feel thankful the marker and paper leaves are there to drop in the box.  Every few days we'll read those leaves and think about and talk about what each of us is thankful for.  

I have one son who loves to draw.  An older son who doesn't especially like to.  One was fine, the other became frustrated with the task of leaf drawing and he got grumpy!  
So we decided to "trace" leaves we had left over from last year and that seemed to work.  I grabbed my laptop too and decided a little bit of Mozart was in order.... Mozart is always good for grumpiness.   

We kept cutting, drawing, tracing and listening and talking about things we were thankful for.   I started reading some of the leaves from last year.  Very sweet.  We lost electricity last year around this time and there was more than one leaf with "Thankful to have electricity so we can run appliances" or "Thankful for the Duke Energy People".  I thought of all of the people in New Jersey and New York without power and water from Hurricane Sandy.  We have power right now.  We have water.  We take that for granted.  We have so much to be thankful for..... We must keep the people in need in our prayers and be generous with our gifts what ever they may be!

At one point Philip, our 8 year old impulsively left the table and went outside.  He came back with some fallen Maple leaves from our next door neighbor's Maple tree.  He decided he wanted to trace a real leaf instead of a paper one.

He did a good job!

My other son was starting to come around too.  He rewrote the Bible verse on the inside of the box and he and I started putting some of last year's leaves in the box.  He read them as he put them in and tried to guess who wrote each sentiment.

A minute or so later I switched to another Mozart concerto for us to listen to.  Philip started asking questions like, "Did Grandmom like this song?"  I told him, "Well, I don't know if she knew it, but I know if she heard it, she would like it."  So many things going on in an 8 year old mind when it comes to grieving a grandparent.  It was sweet to hear him process and talk about Mom.

Philip must have also seen us putting the leaves in the box because then next thing I saw was a leaf on which he had written a little message for the box.  It was not a paper leaf.  It was one of the actual Maple leaves he'd brought to the table.

The first one was for his daddy.  So sweet.  Then he had to make one for all of us! 

I gave him a big hug.  I feel loved!  
And his big brother by this time said, "I'm not grumpy anymore Mommy."  To think of that.... thankfulness and feeling appreciated cured the grumpy morning my middle schooler was having.  Awesome is what I say!  I was right.  Thank you Lord for prompting me to get out the gratitude box today.  It is what we needed to focus on today and in the days to come.
Can't end here without showing the last two leaves Philip shared.

Grandparents make such an impact on their grandchildren..... 
So completely grateful!  

I will continue to remember Lamentations 3:21-23 in the days and months ahead.  

"Yet this I call to mind

and therefore I have hope:

Because of the LORD's great love

we are not consumed,

for his compassions never fail,

They are new every morning;

great is your faithfulness."

Yes, every day is new!  God's mercies and compassions are new every single day for all of us!  I am holding on to those precious words.

My oldest son, Joseph wrote on a paper leaf as we wrapped up our little project.  It said, "I love my family and friends"  I gave him a hug.  He reiterated, "Mommy, I'm not grumpy anymore." with a huge smile. 

Thankful, yes, so very thankful!