"Thank you," he said.

This has been a hard week. In the midst of organizing Gary's medical records and browsing my notes from the "go-zillion" Dr. appts., lab reports and tests, some old feelings have been dredged up.  Again, I find myself tempted to despair.  It shouldn't come as a surprise, that these temptations sneak in when least expected.  You'd think, that since I've been so encouraged by the small, but measurable improvements in Gary's speech and balance recently, I'd be well defended against sadness but I must still guard against the Enemy's attacks on my joy.

Beginning in 2006, and for several years following, we were on a constant roller-coaster ride of emotions as we got devastating news, and experienced the steady falling-away of Gary's mind. On top of that were the secondary trials of finances, insurance changes, moving, changes in lifestyle, etc. There were many, many tears shed over those years.   Lately, most days, it has not been so bad, emotionally.  Acceptance has a lot to do with that.  This is who we are.  We have Alzheimer's Disease in our marriage. Proactively looking for blessings helps too.  Gary is not unhappy.  I actually think he is content as he lives "in the moment" and I enjoy my family, and my friends, and my painting.  I enjoy being with Gary.  We sit together on the sofa and watching Bull Riding, until he falls asleep.  I read the Bible to him sometimes, during the morning when he is alert.  Today I picked his apple up off the floor for him and he spoke to me.  "Thank you," he said. 

I am glad those extremely difficult days of testing, diagnosis, and fears of the unknowns are behind us, but I know there are likely to be extremely difficult days ahead.  We have been laid bare emotionally, and are being humbled under the hammer and chisel of Love.  With my whole heart I believe it is good for us.  It is getting easier to be joyful more of the time, but the last few days have been a good reminder to be on guard, and be aggressive about choosing thankfulness which results in joy. Sometimes saying "Thank You" to God is the furthest thing from my mind, especially when I don't like the gift He's given, and it's frightening, and dark.  But I know that He only gives good gifts.  He is a loving Father.  Choosing to have a thankful heart is sometimes a sacrifice, but it leads to the peace of God.  (Philippians 4:6-7)

"To You I shall offer a sacrifice of thanksgiving and call upon the name of the LORD." Psalm 116:17

Choosing Gratitude by Nancy Leigh DeMoss is a wonderfully helpful book. It has become one of my favorites.  You can buy it  HERE on Amazon.com. 

“In those moments when I have found myself gasping for air, feeling that I was going under, I’ve discovered that gratitude truly is my life preserver.  Even in the most turbulent waters, choosing gratitude rescues me from myself and my runaway emotions.  It buoys me on the grace of God and keeps me from drowning in what otherwise would be my natural bent toward doubt, negativity, discouragement, and anxiety.”  DeMoss

"When prayer teams up with gratitude, when we open our eyes wide enough to see God's mercies even in the midst of our pain, and when we exercise faith and give Him thanks even when we can't see those mercies, He meets us with His indescribable peace.  It's a promise."  DeMoss

Here's a short video to help you in your search for the blessings all around you:  :)

Butter for President Shirts!: http://www.sweetteafilms.com/shop Tavin gets pigeon-holed into what he's thankful for...so here goes! Follow Tavin online! http://www.twitter.com/tavindillard http://www.facebook.com/tavindillard

A Few Days Early - A Love Story (orig. post 2/9/13)

As I was leaving on my errands yesterday, Becky and Karl said..."We're going to let Gary rest up this morning, because we want him to be be wide awake for our outing today!"  "Oh, what are you guys going to do?" I asked.  "It's a surprise!" was the answer. 

So, I went on my way.  It was a super busy errand day, and took me 6 hours to get everything done.  I was pretty tired coming home with my car full of groceries.  Walking in, of course Karl unloaded the heavy bags for me as usual, and I gave a quick look at my napping husband, and put the cold things in the fridge.  I sat down to see the photos of the day, which Becky has ready for me when I get home.  She said, "Have you said 'Hi' to Gary yet?  He has something for you."

Back to the other end of the condo, I went, excited to see what on earth it was.  I couldn't imagine. 

Well, see for yourself:

Gary had a card for me, clenched in his hand.  He was asleep, but holding it tight.

It started with a shopping trip to Stater Brothers.  Gary hasn't been inside of a grocery store in over a couple of years, so this was a BIG deal.  (The last time was in Trader Joes.  It was crowded, loud music, the toy train going around, and he actually said to me..."This is hard for me."  I never took him in a grocery store again.)

A Love Story Lily - FOR ME!​

Karl picked out some red tulips for Becky and Gary enjoyed feeling the leaves while Karl picked out some corn on the cob.  

The candy by the check out line attracted his attention.  He was always one for the impulse items. 

Gary pushed the cart himself, navigating quite well, with little assistance.  Both Karl and Becky were surprised by this.  

Then when they got home, Becky said she handed Gary a small tipped Sharpie and he very carefully and diligently wrote me a note and signed it 'deliberately'.  (If you could see what he normally does with a pencil, you would see how different and special this is.  He did not chew on it, scribble with it or use it as screwdriver.)  She used my name often throughout the whole morning, and she and Karl were convinced that Gary understood what he was doing, picking out a Valentines flower and card for me.  He was "taking it all in."

Someone recently said to me that it is clear that I truly love my husband.  Yes, it's true ant the last few years have increased that love. 

There was a movie from the 70's called "Love Story"  it had one of the stupidest lines I've ever heard.  "Love means never having to say you're sorry."  Stupid, stupid, stupid!

Love means "We love because He first loved us." 1 John 4:19.  Gary and I love each other because Jesus Christ is the dominating force in our lives.  I am so thankful today.  For Jesus, Gary, and our sweet friends and care givers, Karl and Becky, for making our 2013 Valentines Day so special...a few days early.

A.B.C.'s

These are two very special people.  Karl and Becky come twice a week to help Gary while I run errands, shop, keep appointments, and help my parents.  Technically they are Gary's Care Givers, but more than that, they have become our friends.  We've been acquainted for a long time, but since July, they have been officially helping us in more ways than I can count.  I call them the Above and Beyond Caregivers!  They are my A.B.C.'s  Here's why:

Karl reads to Gary.  Sometimes Gary's memory books, and sometimes the Bible.

One day, while there were hymns playing Becky noticed that Gary was mouthing the words to "How Great Thou Art," so she started a list of the songs that Gary was responding to, so she could tell me when I got home.  I add these to his ipod playlist that he listens to when falling asleep at night.

Our community has a pool room, which makes for a nice outing for Gary.  Becky knows how Gary loves patterns, shapes and colors and arranges the balls in the triangles for him to see and feel.

Karl shoots some pool for Gary to watch.  The sound of the balls and the movement is stimulating and enjoyable for him. 

Simple text in large letters on a book cover, found in the Pool Room, and placed in front of Gary for him to read gives Gary the opportunity to keep using his eyes, and mind to read. 

​This is one of their countless walks around our community using the wheelchair, which is necessary once Gary gets tired and his legs get too wobbly.  Karl is so good at pointing things out to Gary and I'm sure Gary enjoys a male voice in his life, since so much of care giving is done by women.

On this particular day, Gary found a feather and brought it back home.

Becky and I laugh about how many times Gary and Karl are looking over a wall in the photos.  This time, Gary was inspecting the rock work.  Karl appreciates a well-built wall as well and patiently waits for Gary to finish checking it out.  Details are so important to someone with dementia.  You never know what is going to catch their eye, and it takes a patient person to give them time to think about it.

This is the Valencia Car Wash.  Karl and Becky have taken Gary here several times.  Gary really enjoys going through the wash, and is fascinated with the water and equipment.  They buy gas too, and this is interesting to him.  It's the "guy" things he used to do on his own, and riding along with Karl is satisfying to him.

He likes to try and put CD's into the player of their car, so they gave him a blank one that says "Gary's" on it.  He brings it when they get out of the car and inserts it into rock walls, and other places. 

At the nearby mall, there's plenty to do and during a weekday morning, it's uncrowded and easier to navigate with Gary. 

Always ready for a bite of Cinnabon

Shooting practice in the arcade

Becky having fun too!  (Don't you just love people that like to have fun regardless...)

Second childhood perhaps?​

​Lombardi Ranch

When they get back from one of their "Adventures with Gary" he's tired, and ready for lunch. Karl and Gary usually watch some Discovery Channel, or Classic Car Restoration programs while Becky gives Gary lunch.  Today it was "Monster Trucks" which Gary watched intently.  When I show up toward the end of the day, Karl meets me at the car to unload the groceries and keeps the trash cans emptied.  To top it all off, Becky has photos ready to show me from the day's outing if there was one.  

It is not easy loading Gary in and out of the car, helping him walk in a straight line, standing up/sitting down, or feeding him lunch.  It would be easier to let Gary sit in a chair and do nothing.  But Karl and Becky CARE about us and are making many of Gary's days full and interesting, and I love them for that!

The Last Three Weeks (orig. posted 1/20/13)

Three weeks into the new year I have a few random newsy items for you.

Jason is a HUGE blessing.  Gary has adjusted beautifully to Jason's help throughout the week.  My back is feeling better and I'm able to run across the street and do things with/for my parents more often, now that Gary is not alone.  An added benefit, I didn't anticipate, is that with Jason here there is more going on, and more conversation to listen to. 

Gary and Jason

Enjoying the Master's College Campus

​More news.  Gary's been talking (and trying to talk) more.  He has said a few short sentences in the last few weeks.  They are in context, if you consider his wit.  Sometimes, when asked a question, he looks into my eyes and moves his mouth/lips.  I don't know what he's saying but he's trying to speak.  It's hard to explain, but I can see the twinkle in his eye and we make a connection.  It lets me know that he's ok. Sometimes he says "That's Right."  or "Yep" when I'm talking with someone else or on the phone, like he's trying to participate in the conversation.  Becky and Karl got Gary a root beer the other day, and when they asked him if he liked it he said, "Always!"  I don't know the reason, but several things may be making a difference...We've cut back a bit on some of his medications for various reasons, and maybe he's feeling better over all, or more alert.

A visit from our good friends, John and Stacy

At Christmas our friends John and Stacy paid us a wonderful visit.  We see them so rarely, but Gary and John have been such good friends for so long, that I KNOW he enjoys hearing John's voice and we really had fun this year, as John was telling fun stories of all the practical jokes he and Gary played on each other during the "Gary Price Electric" days.  Gary watched John and was listening as he told the stories, and it was a true joy to see. 

One last thing...Ever since we moved into our condo, I wanted to change the paint and put some plants in our Atrium.  It is a little patio within the walls of our condo, which is open to the sky.  It has been a very ugly "institutional" green.  Between Christmas and New Years I finished painting it and added some of our Cymbidium orchids which we brought from Sunland.  The fountain was a present from Jon and April for my birthday.  I want to do more out there, but for now, every time I walk by the opening, it makes me smile.

HAPPY NEW YEAR EVERYONE!

"Better Than I Deserve"

Big Sur 1974 - Our Honeymoon road trip

Things I repeatedly hear:  "It doesn't seem fair what you and Gary are going through."  "Gary doesn't deserve this."  "Why did this happen to you?"  Let me tell you, if Gary could speak, and you ask him "How are you doing?"...this is what he'd say.  "I'm doing better than I deserve."  In fact, he'd tell you that it's better to be living with "difficulty" than living "the easy life."  Wise Solomon said "It's better to go to a house of mourning, than a house of feasting, because that is the end of every man, and the living takes it to heart...The mind of the wise is in the house of mourning, while the mind of fools is in the house of pleasure." (Ecclesiastes 7)  Thinking deeply about mortality, is a good thing to do.

Septermber 2012

 As Gary's wife and "caregiver" I am regularly reminded to "take care of myself, because I deserve it."  It's a common belief.  "Everyone deserves to be happy."  "We deserve to be safe."  "I don't deserve to be treated like ..."  But do I, or you, or anyone REALLY deserve to have a good, easy, or prosperous life with no worries or troubles?  Even though we are in the midst of this horrendous illness, Alzheimer's Disease, Gary and I are at peace. We are content.  I want to explain why.

Did you know that I'm a sinner?  Did you know that you are too?  Did you know that sin and evil are real and not just a mistake, mishap or oversight?   "Sin", though not a term that is used much any more,  is anything that men and women do (or don't do) that causes them to fall short of the standard of perfection set by the One who created them, regardless of how our culture tries to explain it away.   In fact, every person born on this planet is capable of doing evil things. When people continually reject God and pursue living for themselves, they can eventually be completely given over to horrible behaviors which are motivated by Satan, who, by the way, is real, and he's not a character in a red suit with horns, and a pitch fork.  The Bible says he "prowls around the earth like a roaring lion seeking who he can devour."  We see evidence of his activities in the news, but we also see in every human being, myself included, a selfish, sinful heart.

One of our fruit trees

 Why?  It goes way back to the beginning of things when God made the world and everything in it.  He put man and woman in The Garden and gave them everything they could ever need including a relationship with Him.  I don't know how long their life of bliss lasted but one day, The Enemy, Satan, started putting seeds of doubt in their minds.  Just like me and just like you, they were tempted to think that maybe God was limiting them in some way, that they "deserved" more.  Maybe they knew better than their Creator.  You know the story.  Adam and Eve took things into their own hands, ate the forbidden fruit, and rejected God's way.  They didn't think God was going to satisfy them any more.  That is known as 'The Fall' and what a fall it was.  If we're honest with ourselves, we'd admit that every single one of us, would have done the same thing.  Even as a young person, I can remember choosing to do what I wanted, even though I knew it was not right. I often had prideful thoughts thinking I was better than others, and many times I didn't trust God and what He said.  Most people say pride is a good thing.  God says it is a sin.

Our old fig tree

So even though God placed Adam and Eve into the perfect world, they messed up.  Now, the earth, and people, had a curse to live with.  God's curse.  Things would not be easy.  Now there would be sickness, weeds, difficulty, and death.  "Not fair" you say?  That's because we don't really grasp the perfect holiness of God.  He is not like us.  He is not lacking anything.  He has complete knowledge and wisdom.  Everything He does is completely just AND he is completely merciful at the same time.  Like it or not, there's a price to be paid for human willfulness, that boldly shakes it's fist at God and says, "I don't need you!"  OR the more subtle "God fits into MY own idea of who He is, and I'll run my own life."  But, even though this is a hard truth, God's perfect justice demands punishment for anyone who would be so bold as to think they know better than Him. Eternal punishment for sinners.

"The wages of sin is death..."  Romans 6:23

2008

As soon as they ate the fruit, knowing they had chosen to disobey God,  they felt guilty, ashamed and hid themselves with fig leaves.  We are just like them.  For thousands of years people have been trying to come up with a solution for their guilty feelings.  You know...that "yucky" feeling you have when you know you did something "wrong."  We try to ignore it, or justify it, or keep busy so there's no time to think about it, but every person on the planet knows they are fallible, and something's just not right.  There is a never ending search for peace, satisfaction, fulfillment, balance or even "religious" activities.  But sadly, most of the world's religions only lead to a deceptive sense of security, based on doing enough good things to please God and win His favor.  But no one can be good enough.

"For all have sinned and fall short of the glory of God." Romans 3:23

Christmas 2012

We are sinful people living in a broken world, with no way to make things right or avoid eternal punishment.  But, God had a plan based on his great love for mankind. He would provide the perfect substitute, His son, to be punished in place of sinful people, IF they would admit their sin and throw themselves on His mercy and ask for forgiveness.  A couple of weeks ago, we celebrated Christmas, The Advent (the awaited arrival).  Baby Jesus was born 2000 years ago in Bethlehem, but that was only the beginning.  He lived 33 years without any sin, ever.  Only God could do this.  Jesus was fully God and fully man. He was born so he could die on the cross and bear the punishment FOR US.  That's what we really deserve!  Eternal punishment.  That would be justice.  But instead God offers us a gracious gift.  He offers salvation.

"For by grace you have been saved, through faith:and that, not of yourselves, it is the gift of God; not as a result of works, so that no one may boast."  Ephesians 2:8-9

Basically, God does it all the saving work.  He offers salvation to the spiritually blind, bankrupt, imprisoned, and oppressed.  (Luke 4:18)  People bring nothing to the table.  That's Love.  That's Grace. Jesus bore His Father's punishment for the sins of all those who would believe/trust Him, when he was crucified.  Admitting our need for this great substitution  is the key to Salvation and being "right with God".  When a person turns from sinning (repents), and believes God (faith), takes Him at His word, he is a new person.  His soul is washed clean.  God no longer sees his sin.  The Bible says God removes that sin as far away as the East is from the West. The debt is forgiven. 

"He (God) made Him (Jesus) who knew no sin, to be sin on our behalf, so that we might become the righteousness of God in Him." 2 Corinthians 5:21

2011

Gary and I just celebrated our 38th Anniversary on December 28th.  We are experiencing the love and care of God in very personal ways and even though Gary and I are suffering the loss of memories, communication, and companionship, God is helping us to loosen our hold on this earthly life, which is just a blink, in light of eternity.  It will be over before we know it, and, just like all of you, we will stand before the Creator in all His majesty.  For the first time ever we will be in the presence of the absolute perfection and blazing glory of God.  Jesus Christ will be there, seated next to His Father.  He will either say, "Depart from Me, I never knew you."  OR "This one is mine. Their life is hidden in Me. Enter in to the joy of my rest." All people will either spend eternity in Heaven or Hell.

Gary began to follow Jesus Christ when he was 21.  I was a little younger, but it is never too late for anyone.  The license plate was on Gary's work truck for many years.  He loved to tell others about Jesus, and how to know Him.  I am positive that my husband would be pleased that God is causing others to consider the condition of their souls because of our trial of Alzheimer's Disease.  Soon after getting the diagnosis, he prayed, "Lord, please use my life and illness to further Your Kingdom and bring glory to Yourself."  So, please, please consider your soul.  Do you trust Jesus?  Do you live for Him?   Are you saved?

This is why Gary and I are at peace, and content

in the midst of advanced stage Alzheimer's.

"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have obtained our introduction by faith into this grace in which we stand and we exult in hope of the glory of God."  Romans 5:1-2

I'm Amazed...let me tell you what's up!

Certain events become "milestones" in our lives.  You know... like the birth of a child, death of a loved one, marriage, etc. Then there are other events that, while on the surface, may be only be mildly interesting, but the "back story" reveals their deep significance.  I have been SO EXCITED to tell this story but had to wait until this weekend.  You'll see why if you read on.

To tell it right I have to back up a couple of years and explain.

In 2007 Gary was diagnosed with Dementia due to Early Onset Alzheimer's Disease.  Over the next few years, as his disease progressed, and we learned more of the typical path ahead of us, big decisions were made.  In 2009 we decided it was best to sell our Sunland home and "downsize" to a more manageable place that would suit our coming needs.  The next summer, we moved to our new home, a condo in a 55+ community in Santa Clarita.  That was in May of 2010.
 

Moving Day - May 2010

From the beginning of our journey, in 2007, my heart's desire was that I could keep Gary with me for as long as possible, and hopefully all the way to the end of his earthly life.  I wanted to be the one to manage his care and this is much easier with him at home.  As his body and mind would decline, I knew I would need more help (see related post), and so when I knew we would be moving, I began to look for something very specific.  A condo so I'd have no yard work, one story for obvious reasons, and most importantly...an extra bedroom and full bathroom to eventually be used for a live-in caregiver when things got beyond my physical abilities.  Many of you have been here and know what a nice home God provided for us which fulfilled these needs, and has a beautiful view to boot!

Our Condo since May 2010

So, since we've been here, I've been asking God for just the right person at just the right time to move in to that room.   Several months ago it became apparent that I needed much more help and so I began adding to our "team" of caregivers.  They are here at specific blocks of time on 3 days a week.  On 2 days I run errands and have appointments, and on Sunday I go to church.  That works out perfectly, BUT, what about the sporadic help I need throughout the other days.  I don't need help 24/7 because 90% of the time, Gary is content to sit in his recliner and listen to music or work with his "projects."   But when I DO need to move Gary to the restroom, or in or out of the car, or getting ready for bed, or up in the morning, my 59 year old body is getting hurt.  My back and shoulders tell me that I am doing too much; the wheel chair is too heavy to load and unload from the car, Gary's "scissor stepping" and balance issues cause ongoing shoulder pain, and dressing/undressing makes my hands hurt because of his upper body strength which he uses to grip the fabric, and resist bending or straightening his arms. 

I know... lots of detail here...but you'll see why...read on.

Tightly gripping hands

At a family strategy meeting in July, as we were figuring out how much additional care giving we'd need, I was asked, "What would be your perfect scenario, Mom?"  I said,  "What we really need is a young man with a strong back who can help with sporadic physical and personal needs throughout the day...10-15 minute segments and then go.  It doesn't make financial sense to hire someone to be here all the time, since caregivers need a 3 hour minimum and they'd be sitting twiddling their thumbs 90% of the time."  Well of course that seemed impossible.  The timing seemed right for a live-in helper, but we couldn't even think of the right type of person.  A student would be gone too much.  A retired person likely lacks strength.  The Lord had provided the room, but who could fill the bill?  We ended the discussion with "We'll just have to keep praying about it, and see if the Lord will work it out."  About that time, our friend, Gretchen, suggested we look for someone who worked from home.  I continued to pray for this as well. It probably goes without saying, but in order for someone to live with us in our home, they need to be trustworthy. 

Support Needed

Ever since God saved me I have loved talking to Him.  He hears me.  He cares.  I tell him everything.  I ask forgiveness when I sin and I praise Him for His wonderful doings.  I ask Him for things that arise up from my desires, but I don't expect Him to provide them if they are not good for me.  I may not see the specific results, but I am convinced that He is attentive and doing thousands of seen and unseen things all the time everywhere.  He is particularly attentive to our cries for help when we entrust the results to His wise, kind, just and loving care.



The family strategy session was in mid-July.  4 days later, I got a call from our daughter in Florida. It went something like this:
 


April:  "Mom I want to tell you something.  Do you remember meeting Jason?" 
Me:  "Yes, I've met him on one of our visits there, but don't really know him."  (He was one of the young men in their church and a good friend of our son-in-law.) 
April: "You know, he follows your blog, he's been praying for you and Dad, and he told us that he would really like to come out to California to help you both.  He wondered if you'd like him to do that?"
Me:  Stunned Silence.  
Me:  "He wants to WHAT?
April:  "You should talk to him.  You'd really like him and he's so responsible and loves the Lord.  He's a really neat guy."
Me:  "Did he know we were praying for someone like him?"
April: "No."

Gary's interestd in  the garden, but can't get back up.

So since July, Jason and I have been shooting emails back and forth, working out the details of how things will work, but to get to the point, he is on his way RIGHT NOW, from Florida to move in with us this weekend.  I have been waiting to share this amazing news until he's on the road since things can always change, but as of now, he's in Texas, and on a course, set by the Lord to be our help and encouragement.  



If you think God is vague and generally disinterested, or too busy to notice the specifics, get this:


Jason has been a CNA. (Certified Nursing Assistant)
Jason has a full-time job which he does FROM HOME!
Jason loves Jesus.
Jason has is considerate and responsible.
Jason is young and strong.
Jason is willing to exchange rent for care.
AND...most amazingly...It was our dear Lord that prompted Jason to want to come and serve us!  Not me or anyone else!

Of course things may change.  I don't know how long a time Jason is going to be a part of our home and lives.  But God is sovereign.  He is Large and In Charge.  This is God's story, not mine.  He can do as He pleases, and I trust Him.   Whether long or short, the HUGE lesson I have learned and will NEVER forget,  is that "God is intimately acquainted with all my ways." as He says in Psalm 139.

"The Lord will accomplish what concerns me..." Ps 138:8

"In my distress I called upon the Lord, and cried to my God for help;  He heard my voice out of His temple, and my cry for help before Him came into His ears." Ps. 18:6

"Because he has loved Me, therefore I will deliver him; I will set him securely on high, because he has known My name.  He will call upon Me, and I will answer him;  I will be with him in trouble; I will rescue him and honor him.  With a long life I will satisfy him and let him see My salvation."
Ps. 91:14-16

God is REAL folks. Take Him at his word.  

Gary at Descanso Gardens

The Perfect Gift

What do you give to a loved one with Alzheimer's Disease?  Of course it depends on what stage they are in, and what their interests are, but I can tell you our family knew exactly what Gary would love this Christmas.

The gifts fell neatly into 3 categories so I will highlight a few so you can be inspired for your future gift-giving.  And you don't need to wait for Christmas or Birthdays with a dear one who has dementia.  They will appreciate a blessing at any time, since they live in the moment.

Textures

One of our grandsons made up the owl pillow which has several different fabrics. Gary enjoyed feeling the felt eyes.  The red fuzzy pom-poms were tied around a different gift and he enjoyed lacing it through his fingers.  Of course there are multiple types of interesting things to handle from wrapping paper to ribbon and boxes on Christmas morning.

 Memories

The Memory Book was my gift to Gary.  I use Shutterfly.com to create these books.  I've made several over the last year, and I choose a format that is simple and easy to read.  Today I looked slowly through it with Gary and he really looked at each page.  His eyes going from left to right, from page to page.   (Click here to read more)

The little memory card is full of digital photos from our daughter Sarah and her family to be loaded into Gary's digital photo frame.  I've shared about this great tool before here.

The Disc is loaded with Bible verses.  They are being read by our daughter, April and her husband, Jon.  They are reading them very slowly and clearly and leaving a pause in between so Gary can absorb them with his slowed thinking. The Word of God does not miss it's mark and I KNOW it is still nourishing Gary's soul even if he can't find the words to confirm it.  Today when I was playing the CD for him, he was sitting very quietly, and I believe he was listening.

Yummies

Of course this category is always appreciated.  Thankfully, Gary still has a good appetite, though he must be fed most things because he gets distracted and forgets to finish eating.  However, when being given bites of Cinnamon Roll yesterday, I evidently was taking too long in between bites (this time I was distracted), and he almost took a bite of a present he was holding instead.  It was obvious that he wanted the next bite of C.R. and we all had a good laugh. Some of his longtime favorites are represented here...Cinnamon Rolls from Sarah, Chessmen cookies and Shortbread from April, and Date Pinwheel cookies from my mom. The marshmellow Snowman is from the Grandkids and he will like it too, I guarantee.

I hope those of you who are currently caring for and loving someone with dementia, will be able to find many ways to love and serve them that they will enjoy.  We are so blessed, especially if we tone down our expectations, and keep things simple.  (and don't forget to laugh!) Gary and I both had a wonderful day yesterday and I trust you all did too. 

Gary's hugging his Memory Book right after I helped him open it.

Getting Comfy with a Good Book

Wear Comfortable Shoes - Surviving and Thriving as a Caregiver

by Peter W. Rosenberger

Wear Comfortable Shoes

is a book for all of us caregivers.  It doesn't matter who you're taking care of, or what their condition is.  Age, condition, or relationship have no bearing on the advice given in this wonderful little book.  Peter Rosenberger has cared for his wife, Gracie, who has no legs.  I care for Gary who has advanced stage dementia.  Parents care for developmentally disabled kids, and most of us will care for an aging parent.  One thing's for sure; You either WERE a caregiver, you ARE a caregiver, you need a caregiver NOW, or you WILL need a caregiver in the FUTURE.

I FLEW through these 115 pages offered from this loving husband who has faced many of the same things I have.  Mr. Rosenberger has been doing this for 19 years longer than I have, and I learned much from him.  He has written personally, sharing his own experience (which includes Gracie's 70+ operations), and with tons of practical advice (including how to ASK for help and where the Church fits in).  He gets right to the point for the reader whose time is limited.

From the Introduction:

"Caregiving spills into every area of the caregiver's life and each area needs addressing.... Understanding and accepting that many of the challenges faced by caregivers only resolve through the death of a loved one, my goal is to equip and empower those caregivers to focus on life. 

Joy, peace and even happiness

await each caregiver, regardless of the circumstances."

On caring for one's self:

"I couldn't insulate myself or my family from events beyond my control, but I could take steps towards quality physical and emotional health.  With that said, I purposed to figure out what 'caring for myself' looks like on a daily (often hourly) basis....I have written in a way that I would want to read it, simple and to the point, filled with tips and lessons that readers can start today." p.8

 "Focusing on the health (emotional, physical, and financial) of the caregiver is not selfish or self-centered, in fact, it is the opposite. 

Exhausted caregivers make lousy caregivers.

" p. 11

These following chapters cover the impact areas of a caregiver's life.

H ealth

E motions

L ifestyle

P rofession

M oney

E ndurance

Throughout the book, Mr. Rosenberger uses a simple

1-2-30

reminder system for us busy caregivers and those who care about us!

In the chapter on Health, for example just remember...

1 Flu Shot

- "Although a flu shot may seem like a simple thing, it is a low-cost way of potentially avoiding a large problem.  We've all suffered from the flu, but caregivers often don't have the built-in margin that allows for "sick-days."

2 Well Visits (including annual physical)

- "A physical allows the caregiver to get out in front of their own health, so that they can stave off scary, but preventable diseases and issues."

30 Minutes of Daily Exercise/Activity

- "Daily exercise seems a no-brainer, but is hard for most people to do consistently.  Jogging, swimming, walking, aerobics, martial arts, the options are lengthy.  Pick one that works for you.  My dog's bladder dictates the amount of daily walking I do, and although I often grumble about it, Mack gives me a good excuse to get outside and walk off some calories."

The most important help of all is in the final chapter, When Your Heart is Hurting and Weary.  You will be blessed as you read about

1 Savior, 2 Hymns, and 30 Words

.

Wear Comfortable Shoes

is my new "you have to read this" book for all my caregiving friends and those who love us.

In our family, for instance, 6 years into Gary's care, there is now a great deal of concern for me too.  Pacing myself, and remembering that my  this is a marathon and not a sprint is the key to finishing THIS kind of race.

If you would like to learn more about the Peter and Gracie Rosenberger and their ministry to amputees, check out their website:

standingwithhope.com

Good Times

Old and new friends have been helping Gary and I get out and do some fun things.  

I can't take him places by myself, so these times have been sweet.  

I only have a smattering of photos 

and they don't always show who's along with us, 

but that's because they were usually the ones taking the pictures.  :)

BRIDGEPORT LAKE

A walk around the lake with sweet friends

Investigating the lawn (the wheelchair is needed when Gary gets tired)

.

Fountain demos

This came about when I mentioned to our Bible Study group 

that Gary & I are not able to get out together anymore. 

Sure enough they set up a sign up system 

so we could have someone go along with us on a regular basis.

 

VALENCIA MALL

Can't go wrong with a Cinnabon.

Or Anniversary Blend

 We usually have 2 outings a week, which are approx. 1 1/2 hours.  

That's about all we can handle. 

VENTURA COUNTY FAIR

With all the sights, sounds, and smells

Getting tired

Horticulture Exhibit

These outings are the highlights of our week.  

Gary gets some exercise and I get to enjoy some time with friends.   

Sometimes we just do something kind of "normal" like...

BROWSING THOUGH LOWES

The old stomping grounds

A walk through Lowes

Or, like today, we went somewhere new (to us)...

 

THE PATIOS SHOPPING AREA

"The Patios" at the Valencia Mall

Our happy companions

The fountains capture Gary's interest

Happy to be out in the fresh Autumn air

One of our favorite places is the beautiful...

DESCANSO GARDENS

Inspecting the Koi pond at Descanso Gardens

The rocks catch Gary's eye.

 Sometimes we don't go very far...we even like to walk around our own...

FRIENDLY VALLEY

Resting after a nice walk at the recreational area gardens.

Did you know that at the corner of McBean and Newhall Ranch, there are...

DUCK PONDS

Watching & listening to the water feature

Tending the garden (I keep a hand on his "gait belt" when he's on the move, because his balance is terrible now, and he "scissor steps" sometimes.)

To all of you who have been my "second set of hands" 

so that Gary and I could spend some time enjoying life together, 

may I say MANY THANKS! 

"For he will not dwell unduly on the days of his life, 

because God keeps him busy with the joy of his heart."

 Ecclesiastes 5:20

My Chat with Carol

My blogging friend, Carol on the opposite side of the country cares for her dear husband who suffers from Alzheimer's. She has a very helpful blog with many good links and book reviews as well as vignettes from their lives.  We share a love for Jesus and she too, is being strengthened by Him.

Recently she interviewed me for her blog.  If you care to read her questions and my answers click here 

"I will be there"

December 28, 1974

Right now I am doing of the hardest things I have ever had to do.  I had to come to terms with the fact that I should not continue to do for Gary all the things I want to.  Therefore, I am systematically assigning to others the many ways I care for him.  Changes are afoot, and I must say that I don't like change very much, unless it's exploring a new vacation spot with Gary, or remodeling the kitchen.  It's hard to look at the changes associated with "losses" as exciting.  The physical care is what I am mainly having to give up as he is less able to participate in sitting himself down, standing himself up, getting himself into and out of the car, and all the personal care things as well.  Though Gary is very compliant with others, it is hard for me to release him to them, as qualified as they are.  We have prayed for help, so that I can continue to stay healthy, protect my back, and have Gary here at home with me.  Help is coming in many forms, and I am so thankful in the midst of my ambivalence.  I must remember that were it not for relinquishing my involvement, we'd both be in trouble.   The red flags have been waving, as I have had to ice my back a few times this month, and have been fearful of "dropping" Gary on the way in from the car due to his loss of balance.

So I'm living in Excel right now, with a weekly schedule that has colorful blocks of time.  (Can't do anything without enjoying colors, right?)  I have lists of care giving agencies, personal referrals, and an unopened box of wheelchair ramps in the hallway.  I'm busy merging existing caregiving schedules, with new ones on the horizon, and if you know me at all you know I like charts, so this part of the process is not all bad.  Our sweet family has divided up some of the research to help making these decisions, and we are having "3-way Skype conference calls" to get things figured out.

A very happy moment on a very happy day1

There are no guarantees that he can always be here with me.  Our daughter made the comment the other day that many families have had to place their loved one in a care facility for very good reasons and our family is not special or unique in some way that we should be immune to this possibility.  But for now, God has made it possible for us to be together, and as a family, we are prayerfully entering into this new phase of greatly increased care in the home anticipating what good things will come of it. 

For those of you who have been praying for the needed help to come, it is partly in place, and more is in the works.  Thank you for bringing our needs before the Throne of God.  One thing I look forward to is the chance to tell you some of the most amazing things that have already happened that truly show the kind, attention of our very personal God.  Gary is the one with the simple, deeply rooted faith in his Savior.  I am trying very hard to follow his example, keep things simple, not over analyze and listen to counsel of our elders, and loved ones.

We're getting there.  It's hard but not impossible.  There are many songs that come to mind lately.  This one had me holding Gary's hand this morning, and singing along with Steven Curtis Chapman to Gary.  Yes, I cried.  To all you care giving folks out there, even if you are not physically involved with you loved one any more, or you have to go visit them somewhere else, I know you are still "there" for your dear one.  I know I will be no matter what.  The song is 4 minutes if you have a chance to listen.  Just click the little triangle, in the picture below.

 

Pass the tissues please...

5 "C's" of Caregiving

I have a lot on my mind these days, (see last post) ,  but knowing that Gary is in good hands for the few hours a week when I can't be with him is such a gift.  Here are some fun photos and video from Friday.
 
CRASHED - We were caught snuggling after a busy morning.   Gary had spent the morning with our care givers.  I had spent the morning running my errands. 

I love this man.

Approaching the car wash.

CAR WASH - A ride through car wash was fully entertaining for Gary.  Plenty to look at and listen to here while Karl and Becky got their car washed.








CAROUSEL - Our friend, Nathan, says "Gary gets to do all the things we all WISH we could do."  This video is proof of that:

CINNABON - Gary LOVES Cinnamon rolls!  He always has and always will.

Karl and Gary...Young at Heart

CREATIVE CARE - Karl and Becky go "above and beyond" to care for Gary and adapting the activities to suit him.  We are so spoiled.  Many thanks to Becky for all the photos and video! 

I love you guys!

Becky and Gary...Listening to the Fountain

"I don't know, I'm making this up as I go!" Indiana Jones

Gary and a "friend" go for a ride.

It felt a little like "Florida Weather" today.  We enjoyed a bit of rain even though the air was warm.  It was a welcome relief from the heat of August.  Having the windows open felt so good and I was able to do some pruning in our tiny garden without sweating.  The forecast is for more hot days ahead, and like most season changes, the Fall weather will not come suddenly. There will likely be warm days with cool nights, and a few more rainy days, mixed with less and less heat, before we are into the cooler days and nights of Autumn.   Seasons change gradually and sometimes imperceptibly here.

Gary and I are in the midst of more changes and that has me feeling a bit off balance.   Come to think of it, we have been making a string of adjustments for several years, and just when things are rolling along with a certain level of care giving, or our schedule, his health declines, and we need to make new arrangements. This is true for many of us who are involved with a progressive illness, or even raising children.  This life is constantly changing.  In a July Post  I mentioned that we would not be able to continue at the Adult Day Health Care program for various reasons.  This was the start of another transition.  Here it is September and we have already been making some changes.  Each week, we now have some "in home care giving," and Gary and I are enjoying some one-hour outings together with a friend helping us.  These activities have substituted nicely for the program.  (I've included photos of some of these great times with our care-givers and our planned "outings.")

Sampling at the Farmer's Market Outing - Aug. 2012

Checking Light bulbs at the Lowes Outing - Aug. 2012

Trying out the W.C.

But just like the occasional changes in the weather, we have had some changes of our own.  Over the summer, Gary's mobility and balance has really decreased.  It's kind of like when a little baby begins to walk, and they make a step or two, and drop to their knees, then they do it again, but step farther before dropping down again, then pretty soon they walk all the way and never go back to crawling.  BUT it's in reverse for us.  We have a "hard" day, and then a few good days, and then a couple of  "hard" days, and then a good day or two, and then pretty soon the "problem" is constant and he never goes back.  SO, we begin to "transition" when we start to see a pattern developing and that is where we are at right now.  In the middle of making arrangements to get even more help.  The wheel chair gets more use and makes it possible to do more and he wears the gait belt all the time, so we can stabilize him but we're looking for more help, and it is a time-consuming process.

Enjoying the Gene Autry Museum Aug 2012

 I wish I could slow things down and keep Gary the way he is for longer so things could stay the same.  I don't like change when it means less "normal'...when it means more distance between us....when it means others doing the things that I want to do for him.  BUT...I can no more control this disease than prevent Autumn from coming. 

Friendly Valley Billards Aug. 2012

Each season has it's own unique pleasures and pains.  We love how freshly fallen snow looks on pine trees, but we don't like driving on icy roads.  We enjoy the beach, but don't like the sun burn.  What's to love about the new season Gary and I are approaching?  I don't know yet.  We are in transition.  But I DO know that there are things about the season we are leaving that I have loved.  Gary talks to me with his eyes.  He knows me, or at least feels comfortable with me.  Old and new friends and our church has come around us.  The physical demands on me have motivated some weight loss.   There's a few.

When I'm tempted to feel anxious or scared about the unknowns or confused about what kind of care to choose, I am not always, but usually praying "God, I don't know what to do, but I know that YOU do.  So help me patiently trust as you unfold Your plans in our lives."  I know He will continue to provide for us exactly what we need, when we need it just as He has all along.


King Solomon, the wisest man who ever lived, said that "God has made everything beautiful (appropriate/good) in it time."  Ecc. 3:11.  This being true I am sure that even this transition, is also beautiful, for it causes me to depend on the Lord and cling tightly to Him just as a child is led across a busy street by his parent until he is safely on the other side. 

Mark Twain, Coffee and a Pastry Sept. 2012

"The mind of a man plans his way, but the Lord directs his steps."  Proverbs 16:9

"He who gives attention to the word will find good, and blessed is he who trusts in the Lord."  Proverbs 16:20

Bad News - I think not.

Our Walk at Lower Lake Castaic (July 2012)

I received a call from the social worker at the Adult Day Health Care Center yesterday.  Gary attends the program 3 times a week and has been going there for about 2 years.  The sweet voice on the phone apologetically said, "Gary is needing a higher level of care, and we are short handed right now.  I'm sorry but in order for Gary to continue attending, his fees will increase and you'll also need to send a caregiver with him to assist the staff with his care."  Well, as you can imagine, the cost would be prohibitive, because the cost of adding a caregiver to assist in the program would be double what we are paying now, so I let her know that next week will have to be his last week.

Working the gadget board (July 2012)

Yes, I shed a tear, when I hung up the phone.  It makes me sad to be reminded of Gary's decline in health.  The program has been good for him, and I am sorry it has to come to an end. The staff have been very helpful and compassionate towards Gary.  He has never given them any "trouble."  He just needs more help than they can give at present.  But as to this news being "bad" it isn't really.  Many of you know that the ongoing decision making regarding Gary's care is always on my mind.  With any progressive illness, adjustments must be made frequently.  Just when you think you have something all worked out for a while, there must be a change in the schedule, or who is helping, or how many hours, or what kind of exercise routine.

Of late, I've been praying for wisdom regarding stepping up the care, as to what would be best for Gary and I. One of the things I had considered was additional days at the Health Care Center.  Well, as usual, the Lord leads...this time by taking that option off the table completely.  God is working His plan in our lives, and I am looking forward to what that might be.  This trial has been humbling for me as I am again forced to "wait and see" what God wants for us.  There are other options out there, which we will explore, but in the mean time, I will choose joy, and peace.  They are promised to me in abundance, and I am going to relish in the good, loving care of the one true God.

At the workbench (July 2012)

A verse I've been thinking about lately is Ecclesiastes 3:11.  "He has made everything beautiful in its time.  He has also set eternity in their heart without which man will not find out the work which God has done from the beginning even to the end."

God has graciously given me an eternal perspective.  This life is brief in light of "forever" and therefore I can have the pleasure of knowing that life IS beautiful and there is a good work going on here. This momentary "setback" is just a part of the process of bringing about a beautiful plan and we are privileged to be involved.

I'm so grateful for so many of you who keep praying for us.  I desire to know God better and better, and want to keep my mind focused on His great love for us.  Please join with me in praying for me (and all of us) to that end.  Thank you.

 

Remembering

(Sorry  if this is a duplicate for you, but I made a boo-boo and had to republish this post.)

As I said in the last post...I am enjoying the recently digitized treasure of Gary's photos from the 60's.  Now that they are digital...there's so much we can do with them!

Thanks, April and Jon!

We received a photo frame from our kids at Christmas.  So I loaded some of Gary's childhood photos onto a memory card, and then plugged it into the frame.  (Forgive the detail, if you already know about these...but I can't help being excited!)  

I love how they cycle through as in a slide show.  Mine are set for 30 second intervals.  The image is about 5" X 7".  (Vertical photos are smaller, but the frame can be turned on it's side if more are vertical.)

Frame is bigger than appears here.

I had this frame sitting around different places in the house, for several weeks, and could never interest Gary in it, until last week.  I put it on the counter, right in front of where he was sitting and he began watching.  I even saw a smile for a little while.  For an Alzheimer's mind, the slow rotation was great. 

Eye level is best.

 Since the long term memories are the last to go, I think he was really enjoying remembering his family's many water skiing vacations, family pets, and projects.  He didn't loose interest for at least 30 minutes.




Last fall I got started making "Memory Books" for Gary.  I've made several, and they are all of our own family photos, scanned from slides from the 70's and 80's.  Now that I have Gary's photos, I intend to make some more memory books for him. For more detail on these...click:  My post about Memory Books

I think the single most frightening thing about Alzheimer's Disease is the loss of memory.  Not just how to tie your shoes, or what you just said, but who you are, and where did you come from.  The confusion that results from not remembering things.  With memories disappearing, I am so glad for digital photos! They are helping to give Gary comforting images to reassure his mind. They also give him something to focus on.

A friend got me thinking today about how God remembers us.  With Gary 'forgetting' so much, I'm glad she brought it mind.  My friend prompted me to think about the following:

1. We may forget everything, but God will not forget us. "Just as a father has compassion on his children, so the LORD has compassion on those who fear Him.  For He Himself knows our frame; He remembers that we are but dust."  Psalm 103:13-14
2. God does NOT remember our sins, since our lives are hidden with Christ in God. "I, even I, am the one who wipes out your transgressions for My own sake, and I will not remember your sins." Isaiah 43:25
3. Now is the time to be thinking about God because life is fleeting, like the vapor on a cup of coffee and no one knows if or when they will not be able to.  "Remember now your Creator in the days of your youth, before the evil days come and the years draw near when you will say, 'I have no delight in them.'" Ecclesiastes 12:1 Here's a great message on this by Rick Holland
   

 Gary may forget ALL things.  God will not forget him.

"Beloved, now we are children of God, and it has not appeared as yet what we will be.  We know that when He appears, we will be like Him, because we will see Him just as He is.  And everyone who has this hope fixed on Him purifies himself, just as He is pure." 1 John 3:2-3

"We are NOT waterskiing!"

I am often asked "How is Gary doing?"  My response is typically, "Pretty good considering.  But the disease is progressing."  There is usually a follow-up question..."How are YOU doing?"  That will have to be another post...I want to use this post to explain some things, and I need to say up front that this is not primarily a plea for sympathy or help, rather to get people up to speed.  Some of my blogging friends have never met us, some of our older friends have not seen Gary for many years and many of you want updates so you can pray more specifically for us.  (In my entire life, I have NEVER seen so much specific, detailed attention from the Lord to our specific situation.  I am 100% convinced that God loves us and hears and answers the prayers of His children.)  In order to give an accurate picture of where we're at with this progressive disease, I have to give a bit of information.  Please bear with me.

ALZHEIMER'S STAGES:

There are

7 Stages of A.D

.  As you probably know, A.D. starts with a bit of forgetfulness, or confusion, and results in complete brain destruction and death, usually from a secondary problem, such as pneumonia or infections. Though you can't place anyone in a specific place in the progression because of overlap, both our neurologist and his primary Dr. have stated that Gary is in the advanced stages.  His mobility and overall health, disguise this.   From the Alzheimer's Association:

Stage 7: Very severe cognitive decline: (Severe or late-stage Alzheimer's disease)In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.  At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.

Everyone is different, and no two people experience ALL of the listed symptoms, or in the typical order.  For instance, some folks are chatty all along.  Gary may say one or two words a day, which may or may not make sense to the listener.  (Have we ever thanked God for the ability to communicate with those we love?  I used to take this for granted.) 

ACTIVITIES OF DAILY LIVING:

Early on with this illness, we were told about the eventual need for help with A.D.L.  I had never hear that term before.  How well I know it now!  Here's the list from the Alz. Association, and a few examples of how it is for Gary and I.

• Bathing - Yep!  I bathe him.
• Dressing - Gary lets me dress him, and tries to help, but in buttoning his shirt, for instance, his hands just get in the way.  Lately he has taken to grasping the closest thing to his hands.  The shirtsleeve, my wrists, anything.  By putting a handkerchief or washcloth in his hand, I can draw the sleeve over his hands without "velcro-fingers" slowing things down.
• Grooming - If Gary looks scruffy, it's because I didn't do a good job shaving him, so don't blame him...it's me.
• Oral Care - He lets me floss and brush his teeth.  He may even try to hold his mouth open, but this is getting harder and harder. I usually have to pry it open and NOT get my finger between his teeth.  That can be a BAD idea! I take him to the dentist for a cleaning twice a year, and if I sit next to him, and reassure him while talking to the hygienist, he cooperates.  We have a fantastic Dental office who have been incredibly helpful. If he gets a cavity, or needs a crown, it will be a BIG problem, so I am always concerned that we keep his teeth and gums healthy. 
• Toileting - Yep!  Nuff said.
• Transferring - (moving from one place to another) So far Gary is mobile so we are not using a wheel chair.  That day appears to be approaching, since his balance is so poor.  I do not let him walk anywhere without someone at his elbow.  He tends to tip backward and has fallen a few times.  In some ways a wheel chair would make things easier, because folks would understand.  As it is, when we are in public and we pass through a doorway, he will try to grab on to the door handle, out of habit to open it for me, but then he won't let go.  This often causes a small traffic jam as people wait for me to un-peel his fingers from the handle.  A wheel chair would signal others that we need some help with doors, etc.  A wheel chair would allow me to wheel him to the table, instead of scooting his chair.  He does not scoot.  He does not move his feet forward when I am scooting the chair, so I have to manually move his feet in front of him so the chair doesn't crunch up his calves.  The reason I am delaying the wheel chair, is that the less mobile he becomes the more his muscles will atrophy and he will have a better life if he is able to move.  But, as I said, I can see the day approaching...
• Walking - When just stepping out, he consistently uses the wrong foot.  For instance when you should use your right, because you are headed to your right, Gary uses his left, so he ends up crossing his feet.  Kind of a "scissor step".  So he must be guided along.  Some mornings, when he has socks on, and I'm leading him he doesn't even take a step.  I end up towing him across the laminate.  He actually looks like he's water skiing.  I have to tell him... "WE ARE NOT WATER SKIING!  You need to take a step." I am pretty sure he has a twinkle in his eye, and thinks it's fun.

2012

1982

• Climbing Stairs - Going up's not too bad, but going down is another story unless they are not too steep.  I now avoid them if possible.  Elevators are ok if they are not crowded.  Gary is not claustrophobic, but I can't maneuver him around very well, and he doesn't understand "stepping aside" or "moving over" to make room for someone.  The elevator at church is particularly difficult, because people are so willing to "squeeze one more in", not realizing our situation.  Once they understand, they are extremely accommodating to us, but I often wait until the next load, which may be more empty. 
• Eating - Most meals take an hour.  (He was always one to "savor" his food.) He takes small bites, which he tends to nibble.  He is having an increasingly hard time dealing with swallowing.  He feeds himself a few bites, then must be fed because he gets distracted, or closes his eyes, or turns the spoon into a screwdriver, or some other mechanical tool. 
• Shopping - Stimulation overload.  Stores are not a good place for someone like Gary.  There's loud music playing, people coming and going, products, displays, etc. etc...There is NO WAY he could buy anything.  BUT in January, we went for Coffee and a sweet roll to Panera Bread, and he stood with me at the glass display case and when I asked him what he would like he actually pointed to a cinnamon-roll-muffin thing.  It is random and rare, that he would make a 'choice' and I was elated.
• Cooking - I keep the sharp knifes put away out of sight if I am not using them.  I do not leave them in the sink to dry.  I keep Gary from going near the stove if something's cooking.  I have had to stop him from trying to pick up a hot pan.  He would not be able to pour a bowl of cereal for himself now.  He does, however open the cookie jar and take out a cookie.  :) 
• Managing - Impossible.  There is no sense of time passing, or to-do lists, or problem-solving.  He no longer writes, or draws.  I do not know if he recognizes his name. 
• Medications - He stopped swallowing pills whole several years ago, but at least he chews them up and doesn't refuse them.  He used to chew up his Asprin, ever since I met him, so don't feel too sorry for him about this.  I think his taste mechanism is somewhat off though because he doesn't even make a face.  If they are "timed release" it can be a problem, so I have to find a version that can be dissolved in the mouth.
• Using the Phone - Phone calls are impossible so he stopped carrying a phone in 2010.  (I did see him pick up an apple, hold it to his ear, and say "hello" when he heard a phone ring recently though.)  Thank the Lord for Skype so he can sometimes sit in on a call to our daughter, April's family in Florida.  At least he can see them, and hear them.
• Housework - (Substitute Yardwork in Gary's case!)  When Gary is taken for a walk, he often stops to pick a "weed".  He does not differentiate between weeds and other plants, but he does pick up little twigs, or sprigs of things.  He still finds some pleasure in "pruning, weeding, and tending."  If he bends over, he must be supported and lifted back up, because he can't usually get himself back up again.  If he does rise up again, he will typically go right over backwards. 

2011 (Gary is too unstable to do this now)

• Doing Laundry - Gary never did the laundry anyway, :) but now there are multiple mishaps and spills, making the washer and dryer run daily.
• Driving - Gary stopped driving in 2008 and voluntarily surrendered his license.
• Managing Finances - He hasn't needed a wallet for 2 years, because he doesn't shop or understand how to count, or make change.  BUT...when asked in February if he wanted to make a Valentine's card for me at the Adult Day Health Care, in one of his rare speaking moments, he said, "How much is it going to cost?"  His helper couldn't wait to tell me about it because it was the only thing he had said in several weeks.  I was presented with a pink construction paper card, with a couple of stickers and a doily glued on.  To me, the fact that he spoke, was the best Valentine gift and it didn't cost anything. :)

At this point, Gary still doesn't wander, repeat himself, get agitated, angry or combative. He continues to enjoy working with his hands, turning any object into a tool; a straw, a spoon, a coffee cup etc.  This can result in a foot massage for me, if I'm lucky!

3 Days Ago

I'm sure he usually recognizes me, and other family members and a few friends.  It has been since 2007 that Gary was diagnosed and since 2006 that the problems began.  Now, 6 years later, here we are with a life dominating illness. I love Gary more than ever, and have been learning from him all along.  While Gary was healthy I took many things for granted, and even complained about some of the things that I now long for.  He has lost so much.  So have I.  I sometimes cry out to the Lord that it hurts to "lose my best friend, and on top of that, it's hard work too."  But, God is enough for us.  I trust Him.  He has proven over and over that does not bring anything into our lives that is unkind and there are no mistakes.  Our burden has been shared and  lifted off of us by so many friends and our wonderful family that I can honestly say that I'm joyful and fulfilled.  I believe that Gary is at peace too.  If you are around him much, you would agree. 

Easter 2012

Gary's Prayers - "Thank You"

Gary's Prayers

since being diagnosed with Alzheimer's in '07

 May 16, 2012

"Heavenly Father, thank you"

Gary prayed last night.  This is the first time in MONTHS that he has prayed out loud.  It was at dinner with some friends over.  His prayer was short.  It ended abruptly.  He got "stuck" as if he was going to say more but couldn't.  I finished for him and then our friend, Steve, commented that he had often heard Gary begin his prayers this way.

Can you even imagine how encouraging these 4 words were to my heart?   He is still giving praise and honor to his Heavenly Father, because he has been rescued from his heart of stone and been given a heart of flesh.  In his simple, random, rare moments, he continues to give thanks to God.

"Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

To the suffering Believers who were scattered about because of persecution, Peter wrote:

"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect(fix what is broken),confirm(strengthen with resolve, under-gird), strengthen(strengthen wherever needed), and establish (give a firm foundation) you."  1 Peter 5:10

Though the circumstances were different, God is ALWAYS using this fallen world to do "a thousand things" in the lives of those who entrust their souls to Him.  May we ALL give thanks (to God) in EVERYTHING!

My Second Favorite Book

My Journey Into Alzheimer's Disease by Robert Davis - A REVIEW

I don't even know where to start.  I have underlined so much of this book that I'm sitting here rereading it again just to choose my favorite quotes.  Everyone I've bumped into this week has gotten an earful from me about this man who wrote down his experience for others.  I've asked my family to please read it, and now I'm excited to share it with you all. 

Just like my Gary, Robert Davis was diagnosed with 'early-onset' Alzheimer's in his 50's.  He was enjoying a wonderful life as a pastor in Miami, Florida for 14 years, when he began the confusion began.  Married 30 years with 2 daughters, and busy with his ministry, his life was abruptly changed as he had to step away from his beloved preaching, counseling and shepherding.  His writing takes place during the early stages of the disease, and possibly into the start of the middle stage.  Some of the chapters were written by Robert, some by his wife, Betty, and some were edited by her. (Especially when he had lost the ability to write, and, though able to record his story, he repeated himself frequently and often had a hard time gathering his thoughts.)

SPIRITUAL JOURNEY

At least half of the book is devoted to his personal history and spiritual journey.  He shares from his heart the deep struggles with the confusion and blank mind which would come and go, and how his relationship with God was able to continue.  Knowing what his walk with God had been like up to this point is important in order to understand how God takes a person where he is at, and continues working in their heart.

"I now realize that instead of holding on to God and pulling myself up by my exuberant faith, I have to relax and have the simplest childlike faith and let Jesus hold me."  R.D.

INSIGHT

In the later chapters he tells what it's like for the person who's mind is confused and how to help them function at their highest ability.  He even relates what he would have done differently in comforting those with dementia in his congregation.

"...if I want to function at the top of my limited capaciy, I must establish a routine and keep to it.  It must stay away from crowds, blinking lights, too much emotional or mental stimulation, and must not become physically exhausted." R.D.

"Whatever reaches my ears with the loudest noise is that which penetrates into my consciousness and rules my perceptions." R.D.

"Perhaps if you have loved ones whose reading is impaired you could make tapes of their favorite Bible portions, Christian poems, or old hymns.  Thus at their time of need God can use your familiar voice to bless and comfort them with God's words." R.D.

I HAD TO STOP AND THINK

I could hardly imagine someone with this illness composing a book.  It's obvious that A.D. effects people differently, but how could anyone form sentences and compose their thoughts with such limited cognition.  But then, Robert Davis had been a communicator by profession, for his entire adult life.  He loved to read, write, study, and speak.  As I've been around the Alzheimer's community for several years, I can see that the basic skills stay a long time.  Even though Gary is in the advanced stage, he still likes to work on little gadgets with his hands, and loves to bend wire with his duckbill pliers, then straighten it again.  So it makes sense to me that Rev. Davis could relate his experiences so well, especially with help from Betty, just as I help Gary by putting the pliers in his right hand and the wire in his left.
  
WHY THIS BOOK MEANS SO MUCH TO ME

It is timely and specific to my questions.

I have longed to understand what it is like for Gary, and how I can better help him.  I am limited by Gary's silence.  If there are things that I can do, to minimize the confusion, and help him focus on what he loves, and what's important, I want to do them.  I pray for understanding and wisdom daily.  How often Gary and I have held each other while I have prayed for God to help us and show me what to do.  I have read many books on A.D. and none have been this helpful, because this time, I was able to get a glimpse of what to do.  My mind is racing with ideas of things to do differently and ways to enhance Gary's life.

I have wondered how God works in Gary's heart.  I know He does, because He promised to, but how does a confused mind grasp it. Does it NEED to grasp it?  Gary was saved from his sins over 40 years ago.  Jesus promised, "I will never leave you or forsake you."  He will "perfect, confirm, strengthen and establish" all of His own.  "And we know that all things work together for good to those who love God, to those who are called according to His purpose." (Romans 8) So there is no doubt in my mind that Gary is safely nestled in the arms of Jesus and his soul is being nurtured day by day.  I am sure God works differently with each of his children, but just reading about Robert's walk with God is SO comforting to me.  Here is another believer, 20 years ago, on the opposite coast, that was being loved and cared for by God, and he knew it, and wrote about it, and it has ministered to my heart.  I believe the Lord sent this book to me to bolster and encourage me and help prepare me for whatever comes next. 

MY FAVORITE BOOK

The Bible of course is my favorite book.  It's Gary's favorite too, and here's what Robert says about it:

 "I am learning to take strength and comfort wherever and whenever it comes to me.  Since it is no longer possible to feed my inner man through the usual channels of prayer, meditation, and Bible study, I am learning to be strengthened by words and instructions that suddenly pop into my mind.  To recall definite things, particularly under stress, is very difficult.  Somehow the more I try to think of something, the more the thoughts disappear.  However, at times certain things pop into my mind, much to my surprise and everyone else's.  I cannot read the Bible, but suddenly miscellaneous Bible verses come to mind.  I take these and think about them for as long as I can, enjoying their truths and praising God for this facet of blessing.  As I do this, I also have a reason to thank God for his goodness." R.D.

One of the MANY reasons the Bible is my favorite book is that it tells me that God is "intimately acquainted with all my ways." and "He cares for me."  I believe it.  When God gave me insight into Robert Davis' spiritual and mental journey, He was answering my prayers.

MY SECOND FAVORITE BOOK

My Journey Into Alzheimer's Disease is only $9.86 on Amazon.com.  It's only 140 pages.  If you have a loved one or friend with A.D. or you are a caregiver of anyone with dementia, you need this book.
 

Gary on one of our walks, December 2011.

Coconut Oil vs The Big Bad Rx Companies

It's easy to get a bit overwhelmed with all the "Alzheimer's" information on the internet.  I really appreciate my friends sharing info with me, since my time is so limited, and they do much of the "sorting out" of what's important.  BUT, sometimes I feel guilty for not giving Gary enough coconut oil, cumin, saffron, Vitamin D, dropping the statins, etc, etc, etc. It could be a full time job keeping up with all the latest, deciding what will help, and then implementing things.  The problem is that though all the testimonials are likely true, there are many reasons someone can improve.  "Hope" for one thing.  If an Alz. patient is depressed, then having hope can be a huge help in lifting the depression, which also causes cognitive impairment.  Another thing that concerns me is that lots of folks on the internet, say their loved one's A.D. was turned around because of some diet change.  Did they really have A.D.?  Was it diagnosed?  There are MANY things that cause cognitive impairment and dementia.  Depression, lack of sleep, mini strokes, brain injury, etc, etc.

When I was buying Coconut Oil the other day, someone asked me if it helps.  I said, "I don't know, but it can't hurt and it seems to help some people."  I have no way of comparing Gary "with coconut oil", to Gary "without coconut oil".  I have tried most of the popular "natural" remedies for dementia (for weeks, sometimes months), and never seen a change for the better.   Unfortunately, the drug companies are the ones with the money to fund widespread testing, so the drugs get tested and the nutritional things don't.  Therefore, we are left with testimonials, and circumstantial evidence to base our decisions on. We live in an age when there are MANY resources, and we can know about them because of the internet.  We DO use medications which have been tweaked and fine-tuned by Gary's excellent neurologist, a reseacher at USC.  That is the course we have chosen to take.  If others elect to avoid them, hopefully they do so, because their loved one would want it that way and that is the best course "for them".  I can't measure how Gary would have been without the meds, but based on research, that has been conducted over many years with many people, the "test groups" that were on these meds did better overall than those without.  After 6 years into this journey, I strongly believe that no one should look down on another because of their philosophy of treatment. 

Many folks have mentioned Dr. Mary Newport's research into Coconut Oil recently.  Actually a friend told me about her several years ago, and I occasionally check her blog.  ( Dr. Newport's Blog ) Her research into Medium-Chain-Triglycerides seems very thorough, and  I have no doubt that her husband has improved since the daily regimen of Coconut Oil but my strengths are not in the area of nutrition or chemistry.  I am better at making memory books for Gary, and playing hymns for him when he is "stressed or fatigued".  Some of my friends ARE good with understanding nutrition and so they will care for their loved ones with more of an emphasis on diet.    Meanwhile, I continue to cook with Coconut oil, and give Gary the chocolate/coconut oil fudge snacks.  Good thing he loves coconut.  In fact, he used to enjoy buying a coconut, and then busting in to it, digging out the coconut meat and drinking the coconut milk, so even though he doesn't say so, I think he must enjoy all the coconut in his diet.

I'm trying a new recipe today for Double Coconut Muffins from SmittenKitchen.com.  Here's a link:  Double Coconut Muffins

A woman's got to know her limitations #3: Five "W's"

Limitation #3: KNOWLEDGE

The Latest Mystery

Who? Gary
What? Inhale...hold breath...exhale with rhythmic interruptions (like throat clearing, but not) with a pained expression and a spike in blood pressure
When? Mostly in the afternoon or evening and at bedtime...when fatigued, until he is sound asleep.
Where? Anywhere, but always when going to bed

I can answer all but one of the fact gathering journalism questions I learned in high school. 
Why? 

Ultimately it's because Gary has Alzheimer's Disease, but as to WHY this particular symptom is happening, I'm in the dark.  Gary can't tell me what it feels like, or why he does this when he's tired.  

Not everyone with A.D. does this, and in fact neither of his Doctors have seen it before.  It seems to me that "why" is the most important question to ask, because if there is a physiological cause, perhaps we could remedy it, to make Gary more comfortable.  I understand that there are many, many symptoms of dementia that are unexplainable, but that doesn't take away my "quest" to understand this one.  His other behaviors don't seem to make him uncomfortable like this one does.  (Just try holding your breath for 10 seconds, and then let it out slowly in short bursts.  Carry on for 10-15 minutes, if you want to see how tiring it is.)  Once he falls asleep, he goes back to normal breathing the same as when he is awake and rested.  The only thing I've found that shorten's the time, is playing instrumental hymns.  I think his mind focuses on the tunes he is familiar with, and he breathes more normally and falls asleep. 

NOW, please...I'm not sharing all this to get everyone worried or send you all on a hunt for answers.  Gary's doctors say it's not cause for alarm and doesn't sound like sleep apnea, because he doesn't "gasp for air".  Even so, I sometimes have a hard time pulling myself away from Google in my search for information on this behavior.  It remains a mystery to me. That is the point of this post...many things in life are mysteries. 

This morning I was reading in Genesis 36-46 about Joseph. Here's what stood out to me in the narrative.

•  Because of his brothers' jealousy and hatred, they nearly killed Joseph, and ended up selling him to some traders who took him to Egypt. KIDNAPPED!  SLAVERY!
•  Next, he became the property of Potiphar, the captain of Pharoah's bodyguard.  But the Lord was with Joseph, so he became a successful man and trusted to be the overseer of all that Potiphar owned, but Potiphar's wife was chasing after Joseph.  When he rejected her sexual advances and  "fled" from her presence, she falsely accused him of rape.  This landed him in prison...unjustly.  FALSE IMPRISONMENT!
• In prison, the Lord was with Joseph and extended kindness to him.  Again, he was put in charge of things.  When a couple of Pharaoh's officials landed in jail too, Joseph helped them out by correctly interpreting their dreams, but when released instead of helping him in return, by reporting to Pharaoh, about Joseph's kidnapping and unjust imprisonment, he was FORGOTTEN!

Was Joseph a victim?  A dupe?  God's pawn?  There were many times when Joseph's tribulations could have logically ended...One brother wanted to rescue him, but didn't get there in time.    Potiphar should have believed Joseph, since he had proven his character already.  Pharaoh's official could have remembered Joseph's unjust imprisonment. What must Joseph have thought?  Did he doubt that God was hearing his prayers? 

• Two years later, Pharaoh had a dream...It turns out that none of his "magicians" could interpret it, so that's when the official, who had been in prison with Joseph, remembered him and told Pharaoh that he knew a guy that could correctly interpret dreams.  TWO YEARS!
• So, NOW Joseph is released to come interpret Pharaoh's dream which has incredible significance for the entire country of Egypt and the surrounding lands.  There would be 7 years of prosperity, followed by 7 years of famine.  Joseph's suggestions about managing the produce, landed him a position of authority in Egypt..."So Pharaoh said to Joseph, "Since God has informed you of all this, there is no one so discerning and wise as you are.  Pharaoh said to Joseph, "See I have set you over all the land of Egypt."  STRATEGIC POSITION!
• When the famine struck, Joseph's father, Jacob, back in Canaan, heard there was food in Egypt and sent his sons to buy some and bring it back.  Joseph of course recognizes his brothers, but they don't know him, and after a series of fascinating encounters, reveals himself to them, and brings his entire family to live in the best land of Egypt at Pharaoh's invitation. 
• Joseph said to his brothers, "I am your brother Joseph, whom you sold into Egypt.  No do not be grieved or angry with yourselves, because you sold me here, for God sent me before you to preserve life.  For the famine has been in the land these two years, and there are still five years in which there will be neither plowing nor harvesting.  God sent me before you to preserve for you a remnant in the earth, and to keep you alive by a great deliverance, no therefore, it was not you who sent me here, BUT GOD..."
• Even though the famine could have wiped out God's chosen people, the nation of Israel was preserved.  "Now Israel lived in the land of Egypt in Goshen, and they acquired property in it and were fruitful and became very numerous."  All because of a young guy being hated by his brothers.  
• Years later after Joseph's father died, the brothers worried that Joseph would seek revenge.  His response to them was reassuring, and made an important point about God.  "As for you, you meant evil against me, but God meant it for good in order to bring about this present result to preserve many people alive."  Genesis 50:20 

There are times that God puts a limit on our understanding.  He is Creator.  I am created.  He has full knowledge about everything.  My knowledge is limited!  God did not "rescue" Joseph until the time was right...Pharaoh needed to have his dream.  Joseph needed to be in charge of the food during the famine.  God was at work saving the nation of Israel from destruction again.  He had promised to make a great nation of Jacob's descendants, and He was working out His plan.  I believe the providence of God is the greatest miracle of all.  God is using the "free will" choices of people every where to work out His plan, all the time.  When he was kidnapped, falsely accused, imprisoned, and forgotten, his knowledge of the plan was limited.  What a thrill it must have been for Joseph to at last see the plan unfolding.   

When I am unable to understand why Gary has strange behaviors, that seemingly make him uncomfortable, and I am not given the key to unlock them, I too am limited.   BUT!  I worship the exact same God that Joseph did.  He loves Gary, and He loves me.  I know that He is good and He is always at work. He may not reveal the details of His plan to me, but better yet, He reveals Himself through His word, and I see His character displayed in His care for us!  Of course I will continue to monitor Gary's latest symptoms, try to see what can be done to help him, and do what the Doctor's suggest, but I am not going to fret about them.  I know where this disease is headed, and so for those of you who love Jesus, I would ask for your prayers for Gary's comfort, and my peace.  Meanwhile, the narrative about Joseph, reminds me that the hand of God at work in the lives of men, God keeps His promises, gives us the strength to be faithful during trials and wants us to be closer to Him. My limited understanding of the "created", is the pathway to knowing the Creator.  This comforts me.

Paul prayed for the Colossian believers that they "would be filled with the knowledge of His will in all spiritual wisdom and understanding, so that you will walk in a manner worthy of the Lord, to please Him in all respects, bearing fruit in every good work, and increasing in the knowledge of God strengthened with all power according to His glorious might for the attaining of steadfastness and patience; joyously giving thanks to the Father who has qualified us to share in the inheritance of the saints in light."(Col. 1)  Sounds like Joseph, doesn't it?