Book Review of "Second Forgetting"

May 2010

May 2010

When we realized that my husband, Gary, was having short-term memory problems, and began the process of diagnosing his condition, we hoped it was something curable, like a thyroid imbalance, or B-12 deficiency.  As the many tests eliminated the more “hopeful” possibilities, there was a recurring and frightful thought.  “I hope it’s not Alzheimer’s.”  I think more people are afraid of getting dementia, than cancer. 

Why is that?

Our memories define us.   Think how many songs refer to our memories.  We take selfies in front of the Grand Canyon.  Love letters are tucked away in a box.  The idea of forgetting what we have done and who we are is terrifying.  For a Christian, the possibility of forgetting God, and our relationship with Him is unthinkable.

Dr. Benjamin Mast has presented a comforting answer to these fears in his book, Second Forgetting.  As a licensed clinical psychologist and committed Christian, he gives hope for those who are forgetting and those who care for them.  After 8 ½ years of caring for Gary, who is now in advanced stage Early Onset Alzheimer’s Disease, I found this book EXTREMELY helpful. 

"Second Forgetting" by Dr. Benjamin Mast

"Second Forgetting" by Dr. Benjamin Mast

Dr. Mast explains The Second Forgetting as follows:   “We are all imperfect and broken.  We forget the Lord, even in the best of health.  This is what I call the “the second forgetting.” p 18.  Everyone forgets God.  Even believers do.  That is why we need reminders.  Dr. Mast sites the Israelites who forgot God repeatedly yet God never forgot them and kept His promises to them.  This is comforting.

Two chapters are devoted to understanding Alzheimer’s disease and how the brain remembers.  Knowing the various ways to access memories stored away in a person’s brain is really useful in helping those we care for.  The distant past, actions, emotional events are memory systems that are accessible longer than the short-term memories which is one of the first “memory systems” to fail. 

The most helpful part for me personally was the section on the Gospel, who a person is in Christ, and how God interacts with believers, whether their minds are healthy or not.  As Gary is mostly non-communicative now, I have been wondering how his inner man can be renewed, though his body is decaying day by day. (2 Corinthians 4:16-17)  I believe it is true, but wondering HOW.  By working his way through Psalm 139 and Romans 8, Dr. Mast draws out how God intimately cares for His own.  He fully KNOWS us.  He extends GRACE to us.  Nothing can separate us from God.  Not even dementia. 

There are some great practical ideas in this book for all of us.

Help for the “forgetful”

The body of Christ has an important role in serving dementia affected families. Practical tips are given for how to serve.  For instance, “Visit, but be flexible.  Caregiving for someone with advancing dementia can be quite unpredictable.  Something could come up that is out of their control and they may need to cancel.” p 119

Help for caregivers

Biblical encouragement to “press on,” follow Christ’s example of service, and rely heavily on His grace in the exhausting days.  In reality we are serving the Lord Jesus, as we serve our loved one.  “As a caregiver, you can take comfort in the knowledge that you too have a caregiver, one who can surpassingly meet all of your needs.  Christ is our caregiver.” P 90

Helping the loved one…

Remember their faith

“… multisensory stimuli can be used to help them remember.  Smells, sounds, sights can prompt recollection of different parts of a person’s story.  Pictures and music can be particularly helpful…”  p 125

December 2008

December 2008

Remember the Lord

All through scripture God sets up “memorials” so His followers would remember the important things.  Who He is, His promises, His kind and gracious deeds to His own.  We can do the same thing with those we care for.  Old photo albums, talking about the Lord, regularly reading the Bible, listening to hymns, and prayer* are good ways to keep God in the forefront of our minds, and help our loved ones do the same.  New long term memories will not be formed, but moment to moment comfort and sanctification can take place. 

Even now, we can be building into our lives habits that would support our relationship with the Lord if we should forget one day.  Dr. Mast has excellent suggestions on this. He closes with the following thought: 

“It is far more significant that God remembers us than that we remember him.  This speaks to the reality that our salvation, from beginning to end, is by grace.  In Grace God reaches out to rescue us – not the other way around.  Our salvation, ultimately is not up to us.  We cannot save ourselves, and there is comfort in this as a person experiences physical and mental decay.” p 163 

Now that Gary is in advanced stage Alzheimer's, I don't know what he is remembering much less what he thinks, but I do know He is safe in God's hands.  We are past the usefulness of most of the practical suggestions from this book, but they are really good and we have done many of them.  If you are caring for someone like Gary, please get this book.  Find out how you can help your loved one remember the Lord, and be comforted that God remembers them.  

*Note: As with any good resource I’d encourage discernment as you read.  There’s a second-hand example given about a Catholic woman finding peace through praying the rosary.  No doubt a true story, but I wish the author hadn’t used it in a book about how to help Christians remember the Lord. 


As always, your comments are always welcome.  Just click on "comments" below.

Watercolor Journal - A Pebble in the Hand

Small actions end up meaning so much later on.  At the time, I didn’t know how much a few little rocks would mean to me.  Yes, they are pretty, and smooth, and remind me of a special place, but now they speak to me in a much deeper way.  Gary and I collected them at Moonstone Beach during our many visits here.  I’m here again.  This time alone since Gary can no longer leave the house.  It’s hard to leave him, even though I know he is well cared for, but I know he’d say… “GO!  Have Fun!”  So here I am. 

 

If interested click HERE for note card and print.

 

Last week, in anticipation of being here, I had the pleasurable experience of painting this exact handful of pebbles. 

 

 

 

 
I stood still for about 20 minutes waiting for this Egret to get this close, and right after this he caught the mouse and took it farther away to dine in private. 

I stood still for about 20 minutes waiting for this Egret to get this close, and right after this he caught the mouse and took it farther away to dine in private. 

I’m here to relax, remember, and make some new memories of my own.  Today, in fact, I explored a new area nearby, and saw something new!  An Egret hunting in a grassy field, and catching a MOUSE if you can believe it!.  I’m so happy I got to see 5 of them when on a walk in the Fiscalini Ranch Preserve.  They were too far away for a good photo, but easy to see in person. 

 

 

 

Gary was so good at noticing the unique things.  One time he’d say, “Let’s collect all GREEN pebbles this time.”  Another it was “Collect pebbles that look like jelly beans.”  Anyway, we did, and over the years have accumulated a few jars of smooth, little rocks.  One time I found all the colors of the rainbow and laid them out on Gary’s handkerchief.  He was also good at finding the perfect flat pebble for skipping too.  I marveled at how many skips he could get out of a throw. 

 

 

Why so special?  It was time spent together, marveling at Creation.  God didn’t have to make rocks in various hues, but He did.  He didn’t have to make light with a spectrum of color, but He did.  I’m happy to be here, for the both of us, being able to look at things with fresh eyes, and refreshed for serving again. 

Getting time away for respite looks different for everyone, but Jesus set the example for us long ago.  Let’s all try to find a way to follow in His footsteps. 

“But Jesus Himself would slip away to the wilderness and pray.” Luke 5:16. 


Nine

Last January I posted a summary of the last 8 years of Gary’s dementia. (Click HERE to read it.)   I wondered if there would be a 9th.  Well, here we are on the brink of 2015 so as of today, the Lord has seen fit to give us more time with Gary.   I thought an update might be in order. 

Frequent visitors in 2014...Canada Geese

Frequent visitors in 2014...Canada Geese

Some of you know there have been many challenges in our lives this year, with the loss of both my parents (in their 90’s) who lived right across the street.  Between Gary’s and my parents’ failing health, and my own health issues, 2014 rivaled 2002, (the year I had cancer), and (2006-2007) the years we were first faced with Gary’s dementia.  Even though there were many special moments, and encouraging days, in the midst, I’m glad 2014 is over.  It’s easy to say something glib like that, but not at all realistic.  I don’t know what lies in store tomorrow, or today for that matter.  2015 might be even harder.  It is so presumptive to think that we can so easily dismiss difficulties, with the turn of a calendar page or a New Year’s resolution. 

The good news is, that God has given us lots of leeway within the responsibility of stewarding our time, bodies, and resources.  With less loved ones to care for now, I’m seriously trying to do some things to “catch up” on my own health, and do what I can to make Gary’s life comfortable, and interesting. 

The following is not a list of resolutions.  Just things I’m grateful to have the time for and a feeling of stewardship of the gift of time. 

More time with the Lord

I sure do need it.  The keys to wisdom and peace are within the pages of the Bible.  Many days this year, my soul has been sustained by a familiar verse studied long ago.  But on recent days, I’ve been able to dig in to God's word, exploring more deeply, and finding rich treasures there.  Recent curiosity of mine:  If a Christian’s sanctification is guaranteed, how does a Christian with dementia grow spiritually?  Thankfully, the Word of God speaks to this. 

Used my mom's dishes for Thanksgiving 2014.

Used my mom's dishes for Thanksgiving 2014.

More memories to savor

It's been fun to go through my parents' things, and sort what to keep, give, and toss.  Discovering little instructional notes from mom, and some of my dad's old model airplanes he'd packed away, were like having them here again.  I miss them so much.  I'm looking forward to preserving my dad's movie films digitally, and using some of my mom's paint brushes.   

 

 

I'm pretty sure this was Gary's last outing...a family birthday party.  It became too hard on him to drag him to social gatherings.  March 2014.

I'm pretty sure this was Gary's last outing...a family birthday party.  It became too hard on him to drag him to social gatherings.  March 2014.

More time with Gary

Another milestone of loss...during the summer I decided to stop getting Gary out of bed to walk him to his recliner.  He does better in his comfy bed.  July 2014.

Another milestone of loss...during the summer I decided to stop getting Gary out of bed to walk him to his recliner.  He does better in his comfy bed.  July 2014.

Since my dad passed away, a couple of Dad’s caregivers came to work for us and we’ve all been pretty busy getting Mom and Dad’s affairs settled.  Now that things are wrapping up across the street I’ve been finding a more comfortable balance of time with help and time alone with Gary. 

More focus on Gary’s needs

Physically, Gary has stopped losing weight but this is not good news.  It’s because he has no fat or muscles to loose.  He is literally “skin and bones.”  Diligence is required to protect his skin from breaking down, and a careful touch as he has no padding.  His heart and lungs are good but many things could trigger an irreversible downturn; a pressure sore, a couple of days of not eating, pneumonia, etc.  Mentally, it’s getting harder and harder to find ways to stimulate him.  He can’t hold his eyes open for more than a few seconds a couple of times a day unless he’s lying flat on his back or on his side.  I found a kid’s animated acquarium-nightlight, that I can put on his tray, or prop next to him.   Truly though, most of the mental stimulation he gets now is hearing, and touch since he really doesn’t focus on things more than a few feet from him.  I try to play hymns for him daily, and read short passages of the Bible out loud.  He loves his Christmas Bells.  I wish he could listen beyond Christmas, but I need a way to hang them, other than the Christmas tree.  Hmmmm…

 

 

A visit from family and their doggies...good medicine!

A visit from family and their doggies...good medicine!

More focus on others.

I'm not sure exactly when or how, but I miss having a regular ministry at church, and have had to put off friends I care about.  Hope to have a bit more time to invest in others.

More attention on my health

For the month of January, I’m trying the “Whole30 plan” hoping to eliminate inflammatory foods and then reintroduce categories to see if I’m healthier without milk, grains, sugar or legumes.  Click HERE for more info on "Whole30".  I’ve been checking off some deferred Dr. visits, and trying to find ways to exercise without hurting my heel spur.  I’m looking forward to a couple of days away by myself pretty soon (like I did last May) for a little time of mental refreshment.  I’ll bring my watercolors with me this time too.


Will there be a "TEN" year post about Gary?  I don't know.  For now I'm happy just knowing that today he is comfortably snoozing away near me.  We made it to our 40th Anniversary last week.  I get really sad sometimes seeing how weak he is, and wonder how much longer he will be with us.  Only God knows the answer to that, so I will keep entrusting my sweet husband to Him.  Each and every day I have with him is a privilege.  Meanwhile, thank you for your love, and prayers and going along on our journey with us. 

Our 40th Anniversary - December 28, 2014

Our 40th Anniversary - December 28, 2014

"Our soul waits for the LORD; He is our help and our shield. 

For our heart rejoices in Him,  Because we trust in His holy name. 

Let Your loving kindness, O LORD, be upon us, According as we have hoped in You."

Psalm 33:20-22

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Delayed, Disappointed, Confused?

It's a favorite of mine...Psalm 25.  In my Bible, it’s got underlines, and notes in the margin.  I'm drawn back to it when I have decisions to make or am feeling overwhelmed.  The first time in my life that Psalm 25 had a huge impact on me was 12 years ago, when I was fighting Stage III cancer.  David’s prayer-song has been a comfort to me ever since. 

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Many of you know my mom went to Heaven in July.  We are adjusting to the “new normal” with her gone.  My dad is lonely, in frail health, and though we enjoy being together, our short visits are limited since I can’t leave Gary alone.  Being responsible for my dad's care, is a weighty thing. 

Over the last months my health has been threatened with headaches, weight gain and overall tiredness.  My father broke his hip (now healed).  My mother died.  Gary has lost more weight, is now unable to walk and is confined to bed.  He no longer seems to recognize me or others. 

A recipe for depression?  Yes, BUT then God ministers to my heart .  God will NOT let His own be "put to shame."  In Hebrew, that means disappointed, delayed or confused. 

Now…let me walk through this precious Psalm and share my heart as I go…Ok?

1 To You, O Lord, I lift up my soul.

You’ve got my soul Lord.  All of my inmost parts.  Again I give myself to You.  You have my attention.  Nothing is beyond your concern, care and plans.  You are large and in charge. 

2 O my God, in You I trust, You are worthy of my trust! 

Do not let me be put to shame;

Don’t let me be delayed…Help me to pace my emotions & energy knowing that Your timing is perfect.

Don’t let me be disappointed…Let me see glimpses of the wonderful things going on in the midst of things not turning out the way I expected.

Don’t let me be confused…Give me clarity in the face of much information and many opinions.

Do not let my enemies (the enemies of my soul…Satan and his demons) exult over me. Don’t let them have the last laugh by discouraging me.

3 Indeed, none of those who wait for You will be put to shame;
Those who deal treacherously without cause will be put to shame.

What a sweet promise…that if I “wait” for You to act, I won’t be “delayed, disappointed or confused.”

4 Make me know Your ways, O Lord;
Teach me Your paths.

I want to do what you would do, Lord.  Let your love and wisdom flow through me.

5 Lead me in Your truth and teach me, 
For You are the God of my salvation;
For You I wait all the day.

Keep me always learning from your Word because You are the One who saved me.  I'm eagerly looking to You for direction and help for the two frail men I love.


6 Remember, O Lord, Your compassion and Your lovingkindnesses,
For they have been from of old. 

Show Your compassion to Gary and my dad.  Be merciful to us. 

7 Do not remember the sins of my youth or my transgressions;
According to Your lovingkindness remember me,
For Your goodness’ sake, O Lord.

Lord, You are using the pressures and stresses of these days to reveal sin, lying beneath the surface in my heart.  You are good to do so.  Please forgive my impatience, and pride.

8 Good and upright is the Lord;
Therefore He instructs sinners in the way.

You are SO GOOD, to point me in the right direction.

9 He leads the humble in justice,
And He teaches the humble His way.

I’m incapable, inadequate, often wrong, and proud.  Keep me humble in order that I can follow Your lead.  

10 All the paths of the Lord are lovingkindness and truth
To those who keep His covenant and His testimonies.

ALL the paths…I’m so encouraged and comforted by this promise that everything You do, is merciful and true.  There is no unkindness or deception with You God.  Your ways are good, even these current difficult days. 

11 For Your name’s sake, O Lord,
Pardon my iniquity, for it is great.

Because of who You are, You forgive.

12 Who is the man who fears the Lord?  He will instruct him in the way he should choose.  His soul will abide in prosperity, And his descendants will inherit the land.

So many promises, to the one who fears God.  “He who fears God, has nothing else to fear.”  Spurgeon  Wisdom in decision making…Everything my soul needs…Care for my family...

14 The secret of the Lord is for those who fear Him,
And He will make them know His covenant.

And more...Intimate relationship with the Lord and promises KEPT.


15 My eyes are continually toward the Lord,
For He will pluck my feet out of the net.

I want to keep looking to God for everything because he’s going to rescue me from temptation.

16 Turn to me and be gracious to me,
For I am lonely and afflicted.

God, give Your grace to our family as we experience loss and suffering.  It is hard to see my dad and my husband like this. 

17 The troubles of my heart are enlarged;
Bring me out of my distresses.

My problems seem big to me but to you they are not.  Save me from MY actual distresses, and from "feeling" distressed. 

18 Look upon my affliction and my trouble,
And forgive all my sins.

Give your attention to the problems I’m facing.  Forgive those sins of worry, doubt, and trying to do things in MY strength.

19 Look upon my enemies, for they are many,
And they hate me with violent hatred.

Deal with the unseen but very real enemies of my soul, for I know they want to discourage me and wear me down.

20 Guard my soul and deliver me;
Do not let me be put to shame, for I take refuge in You.

Keep my soul safe as you bring me all the way to Heaven one day and don’t let me be disappointed, delayed or confused, because I’m going to hide in your protective love.

21 Let integrity and uprightness preserve me,
For I wait for You.

Build integrity and righteousness into my life and let them keep me strong and protected because I’m choosing to wait on You. 

22 Redeem Israel, O God,
Out of all his troubles.

You are the ONLY answer to the troubles of this life.  We look to You eagerly anticipating our marching orders and asking for Your help every day.  Help my resolve when I am weak.

 

 


Watercolor Journal - Walking the Planks

Inspired by the boardwalk, the ocean and the many wildflowers.

Inspired by the boardwalk, the ocean and the many wildflowers.

Moonstone Beach at Cambria is on the California’s Central Coast.  A view of the ocean from my window, inspired this painting, and I painted most of it right there on my mini-retreat, alone, two weeks ago. Moonstone Beach Drive runs along the bluff with the view on one side and the hotels on the other.  Cambria is our best, “close” place to make us “feel” far away.  It is a 4 hour drive from home that seems much farther.  The only man made thing between the drive and the beach side is a boardwalk (see it?) that runs the length of the beach on the bluffs, amidst sage, wildflowers and pines.  I’m guessing it was originally built to encourage people to stay off the natural landscape, which it does, but there’s more to it's story…my story at least.

2005 - Things were fine then.

2005 - Things were fine then.

I have walked this boardwalk with Gary before, and at those times gave it little thought, but on this solo trip, the wooden walkway was an inescapable connection to my husband.  Memories of other days rolled over me like the nearby waves.  Gary and I had walked along the bluffs many times.  If the day was cold and misty, we had coffee in hand.  If clear and sunny, we had sunglasses and trail mix.  It was always refreshing or leisurely or inspiring, but whatever it felt like, it was shared.  The wooden planks are frequented by runners and walkers, lovers strolling, surfers checking out the waves, tourists with binoculars hoping to see an otter or sea lion, and underneath are ground squirrels hoping for a treat.

November 2011 - Middle stage dementia, but still enjoying the walk.

November 2011 - Middle stage dementia, but still enjoying the walk.

We have been coming up here for many years.  We love it here.  Our daughter, Sarah and her husband Ryan, came along with us 2 1/2 years ago to help me with Gary.  It would be the last time for Gary and I to be here together.   I remember that during that trip to Moonstone, Gary enjoyed walking on the sand without anyone guiding him and at dinner, how much he enjoyed his salmon dinner fed to him by Ryan from across the table, as I sat next to him at Robin's Restaurant.  It was a very special time. 

Right now, at this moment, the waves are breaking in rhythm.  Someone is walking hand in hand along the bluff.  I’m happy for them.  I’m happy for us. 

Moonstone Beach, Cambria, California - Walking with the Lord and very sweet memories.

Moonstone Beach, Cambria, California - Walking with the Lord and very sweet memories.

 

 

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My Mini-Retreat (Caregiver Care)

This week I did something I have never done before.  I took myself on a mini-retreat in search of a breath of fresh air, time to think, remember, create, and rest.  Everyone is busy, not just caregivers, but there is a daily weariness that I experience that is hard to explain.  The idea of leaving Gary for a couple of days, was not appealing until recently.  A couple of years ago, he would have been confused about my absence, but now he is unaware of the passing of time, or who it is that is caring for him.  Things have been much harder in 2014 and my attention is diverted in many directions in addition to the sad decline in Gary.  So, for several weeks I've been planning to take a couple of days off, and let the Lord take care of me.  I packed a good book, my watercolors, and my Bible.

Sunday

Sunday morning, Gary's caregivers arrived and I said good-bye.  It began with a beautiful drive.  I enjoy driving when there is no traffic, beautiful vistas and Keith Green's music playing.  Two of my favorite's are The Prodigal Suite, and Stained Glass.  I was surprised how many times I was reminded of former times, and in a way, Gary came along with me.  We were dating when we first heard Keith Green at Calvary Chapel in Costa Mesa.  His worship music was a big part of our early years, and still is. 

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I arrived at 3:00 at Moonstone Beach in Cambria on the Central Coast.  Gary and I have stayed in several different hotels here, but The Fogcatcher Inn is our favorite. 

 

 

 

My adventures began with a brisk walk along the boardwalk along the bluff.  It was quite windy, and cool, but very refreshing.  How often I had walked hand in hand with Gary on the same boards.  But this time I was alone and it was ok. 

 

 

 

I took tons of photos.  Tried some "selfies," and shot scenes for painting reference and of course capturing the views to help my own memories.   

I walked along the beach too, scoping out a good location to paint the next day, and found a 3 pebbles to save.  Each time we went to Moonstone Beach, Gary and I would gather "theme" pebbles.  One year he'd look for jelly bean shapes and colors.  Another, it was all white, or all green or all brown.  They sit in jars in our sun room.  I must confess, it's not as fun gathering them, without someone to show your special "find" to. 

Painting reference

Painting reference

Back at the room, I worked on a sketch for the beach painting to be done the next day.  It is an amazing thing to have uninterrupted time.  Throughout my retreat, I kept thinking, "What?  It's ONLY 5:00?" instead of the typical "What?  It's 5:00 ALREADY?"  Here's a preview of the scene I was planning to paint "plein air" (outdoors). 

At dinner time I got a Tri-tip Sandwich to go at the Main Street Grill in Cambria and brought it to my room and saved half for lunch the next day. 

The evening's entertainment was the film, "Miss Potter" about Beatrix Potter starring Rene Zellweger.  I've seen it before, but somehow it seemed fitting for this occasion.  One of her comments as she was anticipating the publishing of her Peter Rabbit book was "We shall look upon it as an 'adventure'.  It is a very sweet story, and I related on many levels; especially her love of watercolors, and the outdoors and her losses. 


Monday

One of the reasons we love the Fogcatcher is the complementary breakfast!  It is not just danish rolls, mind you, it is the real deal, complete with sausage, eggs, waffles, and pastries.  Peets coffee and a tray to take it to your room if you want.  Now, about the room...Cozy, and facing the ocean, the view from here was better than the nicest restaurant. 

I had brought along "The Glory of Heaven" by our pastor, John MacArthur because I decided to focus my thoughts on Heaven this week.  I want to think about Gary's future (and mine).  A couple of thoughts on this...Since, as Christians, our "citizenship is in Heaven," (Phil. 3;20), we already belong there.  It's where we are going one day and we can benefit partially now, from all the bounty of Heaven.  Something else...To be "absent from the body is to be at home with the Lord!" So when we're in our earthly bodies, we are not at home with the Lord.  We are walking by faith not by sight.  One day, Gary will shut his eyes for the last time, and when he passes into eternal life, he will walk by sight, not by faith.  His faith will become sight! 



I spent the rest of the morning painting the view out my window.  I'm only including one tree because I'm allowed to do it however I want!  :) Here's the start of it.




The afternoon was spent browsing the gift shops and galleries in town.   This might seem odd, but it reminded me of Gary too.  He enjoyed looking in all the "cute little shops" as he called them.  We never came to the Central Coast without coming home with a new plant from a local nursery.  One favorite place in town, is an old house, complete with gardens in back, and each room in the house is a showroom.  The mud room is for gardening related gifts, and the kitchen is where they sell herbs, essential oils, and potpourri.  Out back there is a 'fairy' garden with cute displays.  This is where we first saw a Newport Fairy Rose bush.  It is an aggressive rose, and gets really big.  Gary bought one 15 years ago, at the same shoppe and planted it by out arbor out back.  in no time it covered the big arbor and was beautiful.  It was one of the things I hated to leave when we moved.  Seeing it again, made me miss Gary. 

In the late afternoon, the lighting was just right and the tide was low enough to go back and paint the outdoor scene.  I got set up in just the right spot, on the sand, and began the fun challenge of capturing the beauty and feeling of the place, while keeping up a pace to beat the encroaching waves and mist as the wind began to pick up.  I suppose I was out there for 90 minutes before snapping a couple more photos and calling it quits, planning to finish it up later. 


The day ended with another long walk and a good dinner.  This time, Asian Chicken Salad.

Tuesday

Breakfast. Reading about Heaven. Prayer. Painting.  Frequently I would start to think of doing something...such as going for a coffee refill and ask myself "Will Gary be ok if I go downstairs and get the coffee?"  "Oh, yea, he's not here.  Go ahead and get the coffee."  It's a big adjustment being 'on my own.'  One thing caught me really off guard and hit me hard.  I decided to wash the windows before heading out.  As I did, it reminded me how Gary loved to do that whenever we were getting ready to travel.  He took great pride in getting them streak free.  Silly, what makes you get emotional, but I really missed him right then, washing my car windows in the hotel parking lot. 

I stopped for one last long look at the ocean at the south end of the beach on my way out, and had a snack there.  I decided that I would like to do this again, maybe next year.  It would be nice to look forward to.  I was able to go to the same places Gary and I shared together, and enjoy myself.  It was a happy/sad time, but I know he would want me to be doing these things and that makes me feel bold about venturing out a little. 

 

Driving home, normal anticipation of being with my love again was clouded by the knowledge that he wouldn't be able to participate in my joy.  But in a weird way he does.  We are 'one flesh.'  My joy or sadness is his, and his is mine.  On the way home, I stopped for a late lunch in Solvang, which was OUR first stop on our honeymoon road trip 39 1/2 years ago.  I was facing more memories, and again, It was ok.   When I got home and greeted Gary I wish I could say he responded but he didn't.  I told him all about my time, away and maybe he caught some of it, but I couldn't tell.  I put the 3 pebbles in his hand, and helped him hold them for a minute.  Hopefully it brought back a good feeling for him like it did for me. 

"Surely goodness and mercy will follow me all the days of my life and I will dwell in the house of the Lord forever."  Psalm 23:6

Never Forget

I want to remember the "old" Gary. 

2004

2004

One of my greatest fears is that when Gary is gone to Heaven, is that I won’t remember how he was in the past.  His strong body is wasted away, and there isn’t much left.  He looks so different.  His muscle wasting has revealed his skeleton, covered only by his skin.  His skin is easily bruised, especially on his fore arms where the slightest bump can cause a minor skin tear.   His remaining muscles can barely support his own weight and only with two helpers.  Shaving is difficult because his cheeks are so sunken.  His eyes no longer twinkle with an unspoken private joke.  They usually look right past me.  His voice is unused.  His attempts at speech are lip movement only.  His mouth is open all the time, causing his saliva to thicken and his mouth to get dry.   

Stealing a kiss on Valentines Day.  Three months ago.  He's lost more weight since then.

Stealing a kiss on Valentines Day.  Three months ago.  He's lost more weight since then.

Gary is comfortable and content.  Except for meals, he is asleep.  His Dr. said that most people with Alzheimer’s at this stage are no longer eating.  Because he is a young Alzheimer’s victim, who had a strong body to start with he is doing better than most.  Most of his energy is going to digestion, organ support, and the disease itself, and so he is very, very sleepy all day.  He sleeps in the recliner from 9:00-2:00 and then back to bed for the rest of the day.  Swallowing is getting more challenging so food has to be just the right consistency for him.  Many meals are only partially eaten because he falls asleep.  It seems the final decline may be right around the corner. 

Sometimes I want to scream at the disease…“STOP THIS!”  It feels like a powerful train engine, slowly moving forward.  My attempts at jumping in front of it to try to hold it back would be useless.   Instead I am trying to make it a pleasant ride down the tracks for both of us.  I play his favorite hymns, swab his dry mouth with cool water, and remind him of the past with a familiar touch and voice.  I try to take care of myself too, with nourishment for my mind, soul and body. 

One of the reasons I write a blog and post old photos are to help my heart remember.  I saved a recording of Gary’s voice on a voice mail message several years ago.  I play it when I want to hear him talking.

I want to remember these Alzheimer's years too. 

Dear friends who are moving away this month came to say 'goodbye' to Gary and I.

Dear friends who are moving away this month came to say 'goodbye' to Gary and I.

They are rich.  They are precious.  In many ways more sweet than the 30 years before dementia came in the door.  Gary is still Gary.  It’s just that his brain and body are dying.  God’s promises are still true.  "I will never leave you nor forsake you." (Jesus)  

I don’t want to forget the sights and sounds of this hard journey.  It’s all part of the bond and love in marriage, and joy of serving Christ together.  We are on our way to Heaven, both of us.  This world is not our home.  We’re just passing through mortality and one day will put on immortality.   Every part of this life is valuable and worthy to be remembered because the past, present, and future are all connected.  I don't want to "discount" the last few years as wasted.  I have the privilege of assisting my beloved Gary along his difficult way.  Along the way I get to observe some of the amazing things God is doing in our lives. 

"But having the same spirit of faith, according to what is written, 'I believed, therefore I spoke,' we also believe, therefore we also speak, knowing that He who raised the Lord Jesus will raise us also with Jesus and will present us with you.  For all things are for your sakes, so that the grace which is spreading to more and more people may cause the giving of thanks to abound to the glory of God. 

Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. (2 Corinthians 4)

I want to look forward.

For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look NOT at the things which are SEEN, but at the things which are NOT SEEN; for the things which are seen are TEMPORAL, but the things which are not seen are ETERNAL."  (2 Corinthians 4:13-18)

For we know that i the earthly tent (body) which is our house is torn down, we have a building from God, a house not made with hands, eternal in the heavens. " (5:1)

Life is a Continuum

It's not that hard to remember his past because it is tied to his present and future. 

Past - Gary's sense of humor directed at the important things in his life.  Even thoughts of life and death, reflected in this favorite book of his.  It's a collection of funny and serious epitaphs. 

Present - Now that he is nearing the end of his life, it seems appropriate to think about his life and the seriousness of eternal things. 

Future - One day he WILL be in eternity, as we all will.

 

 

He had a favorite epitaph in the book, that I heard him tell people about many times.  Gary is still with us of course, but I think would be appropriate to share today.   He has it highlighted...

I can't imagine seeing this on a tombstone, but it's so poignant.

I can't imagine seeing this on a tombstone, but it's so poignant.

May I encourage you...

  • Record yourself sharing your testimony so your family will have your voice and story to remember.    We wish we done this with Gary.
  • Ladies, nurture your relationship with your husband, and learn to follow his lead so you will be able to move confidently through a trial knowing what he'd want you to do.  Don't waste the years in complaining about trivia.
  • During a trial, no mater how small or large, hang on tenaciously to God, trusting Him, knowing that there are future blessings in store, as well as good surprises along the way.
  • Believers, let us learn more about Heaven and think on it often.  That is where we will be for eternity.  God has much to tell us about it in His word. "...they will see His face..." (Rev 22)
  • Unbelievers, think about your future.  We don't know the number of our days as a mortal, but everyone will live for eternity in Heaven or Hell.  Make sure you give thought to this now when there is time.   To read more...


"Just Breathe"

“Take a deep breath, Mom.”  That’s what my son-in-law, Ryan said to me the other day.  It was exactly what I needed to hear at the time.  The afternoon had been chaotic.  On my way back from my chiropractor, where I’ve been getting a series of treatments for a very painful neck, I got a call from my sweet mother, who was being taken to the hospital from her own doctor’s appointment, by ambulance.  Her doctor was rightly concerned about her escalating symptoms, and she needed a higher level of care, and better diagnosis of what was going on with her heart.

When I received the call, I knew several things needed to be done.  My dad, frail himself, would need someone to stay with him for the rest of the day and overnight.  Gary can’t stay alone either.  It’s a blur to me now, but I DO remember spending time with my dad, comforting and praying with him, being on the phone for a couple of hours trying to line up care for my dad, and Gary, and locating mom’s purse which did not make it to the hospital from the doctor’s office.  Just like the recent earthquake, the accompanying adrenaline rush and problem solving began. 

This makes me laugh.  I saw this on a recent outing.  Reminded me of my posture BEFORE the visits to my chiropractor, Dr. Sawyer in La Canada!  He has really helped my neck pain! 

This makes me laugh.  I saw this on a recent outing.  Reminded me of my posture BEFORE the visits to my chiropractor, Dr. Sawyer in La Canada!  He has really helped my neck pain! 

Stressful things happen to everyone.  We try to manage the situation but it is hard to stay calm in the midst…  Ryan was here, helping out with my dad, and Gary that night, when he wisely reminded me to be calm and relax.  In recent weeks, my blood pressure has been acting up and I’ve been dealing with chronic headaches.  I’ve written about this before, but caregivers must be careful to do what they can to stay healthy.  The most common reasons I’ve heard for high blood pressure is stress and age.  Sadly, there’s nothing I can do about my age, and not much I can do about the stresses of life either.  It’s a fact of life that we are going to be assaulted from time to time with “troubles.”

I used to think Doctors were coping out when they blamed symptoms on "stress."  Not anymore.  When discussing my high blood pressure, my doctor brought up the burden of caring for Gary, and I said, "But I've been doing this for 8 years and never had any physical problems."  She answered, "Yes, but you're 8 years older now." 


Mom and I at the Christmas Concert, 2013

Mom and I at the Christmas Concert, 2013

Let me quickly interject that Mom is out of the hospital, and happily back home after a few days of testing and resting.  She is so precious to me.  I am grateful that God is keeping her great big loving heart going. 

 


I don’t know for sure if my health issues ARE due to stress, but they certainly draw attention to my “full plate.”  Doctors are telling me to manage stress, friends are really concerned and people I barely know are asking me if I’m feeling ok.  (I must look tired or something.)  So, I’ve been looking at how full my plate has been lately.  What's on the plate?  Increasing moments of sadness over Gary slipping away from me and the changes in his body.  My dear parents relying on my advice and help.  My artwork and the associated deadlines.  The daily tasks of life.  All while not feeling well.  I am not trying to be a superhero.  I’m just doing the “next thing” that needs to be done.  Whether brushing Gary’s teeth, going for a MRI, shipping a greeting card order, or picking up a prescription for a loved one, we do what we need to.  It’s our joy and privilege to help those we love, and keep things running smoothly.  You know what this is like. 

So we make changes if we can, and if we can’t we live with acceptance and flexibility   For those of us who are Christians, we trust that God is with us in the midst and has a perfect plan with our lives which we don’t always understand.  I want to live close to His side, abiding with him and drawing on His strength.     

The apostle Paul had way more troubles than I do but this is encouraging. 

“But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; WE ARE AFFLICTED IN EVERY WAY, BUT NOT CRUSHED; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh.” 2 Corinthians 4:7-11

Practical stuff I'm doing:

New succulents for the patio.

New succulents for the patio.

SAY NO - Accept that I can’t do everything I want to especially when I don’t feel good.  I had to cancel our monthly ladies bible study group that meets at my house, to be moved elsewhere.  Even though I "could" have hosted them, I needed to rest. 

SAY YES -  to a change of pace.  I’ve been sprucing up our little patio a little bit each week.   It’s been a very nice diversion. 

SLEEP -  I’ve been trying go to bed earlier.  Thankfully, Gary is a good sleeper, unlike many with Alzheimer’s so my sleep has been sweet lately..  “I lay down and slept; I awoke, for the LORD sustains me.” Psalm 3:5

EAT HEALTHY -  Juicing anti-inflammatory vegies.  (Recently learned that stress causes inflammation.) I’ve been enjoying a spinach, carrot, apple, ginger combo.  The ginger makes it zippy but I like it.

Walking in our neighborhood.

Walking in our neighborhood.

RELAX AND BREATHE - Trying something new…diffusing essential oils.  Hoping they will help with the pain in my sinuses.  Our room smells SO good now.  (Eucalyptus, Peppermint and Lavender) 

EXERCISE - Even a 20 minute walk is invigorating. 

GO TO THE DOCTOR -  I’m having different tests and treatments to get to the bottom of these headaches.  So far, they are not abating, so will get a brain scan this week.

GET ALONE WITH GOD -  I’m talking to Him more than usual, (especially in the night) and enjoying my time alone with His word in the mornings.  Here's why... 

“We were made for Him, we are meant for Him, we have a correspondence with Him, and we will never come to rest until, like that needle on the compass, we strike that northern point, and there we come to rest - nowhere else.” D. Martyn Lloyd-Jones


Upside Down and Backwards

Ok, so it happened again.  Monday morning I went into protection mode.  As mommy or grandma being protective feels normal.  As a wife, not so much.  Here’s what happened.  I was sitting in the sunroom at 6:30 am, when the earthquake began, I got up and immediately went back into the bedroom to be with Gary.  In years past, I’d go to him so I’d feel safe by his side, but not today.  This time was different. 

5 Freeway at Newhall Pass - Northridge Earthquake 1994 (Photo by Gary)

5 Freeway at Newhall Pass - Northridge Earthquake 1994 (Photo by Gary)

Growing up in earthquake country, I am not shocked or panicked when one hits, but they still give me an adrenalin rush and spur me to action.  It’s amazing what you can process in just a few seconds.  “Is it stopping?  Is it strong?  Should I move to a doorway?  Where’s the safest spot if it gets worse?  Most of the time I end up feeling rather silly, because even though we do get occasional earthquakes here, they are not typically bad enough to cause any damage.  I did, after all, survive the 6.6 1971 Sylmar Quake (65 dead, 2000 injured), and the 6.7 1994 Northridge Quake (57 dead, 5000 injured).  I was 16 and 15 miles away, respectively.  For those, I felt justified in going to a doorway but our damage was limited to some dishes and pictures falling.  So on Monday morning, being 27 miles away from Westwood’s 4.4 earthquake, there really wasn’t much to write home about, but there’s always the adrenalin, and the not knowing how long, or how strong. 

Random Building, San Fernando Valley - Northridge Earthquake (photo by Gary)

Random Building, San Fernando Valley - Northridge Earthquake (photo by Gary)

In the middle of the Northridge Earthquake, I remember Gary taking charge, calling across the house to our daughters in the dark, telling them to stay in their doorway, (where they were hugging each other) and then stay in their rooms till they had shoes on because there was broken glass throughout the house.  Then he went out and checked the gas line, and gave us the all clear.  We all felt so safe with him watching over us.  But, this time, for the first time, I went into “protection mode.”  If it got worse I wouldn’t be able to move Gary anywhere quickly.  If the walls came crumbling down, we’d have to ride it out together, covered up with pillows and blankets.  I just knew I needed to be with him.  Not for my safety this time, but for his.  Now I’m protecting my husband because he’s defenseless. 

Gary and I experience many apparent “role-reversals” on a day-to-day basis.  It can be unsettling.  My world and how I function in it, has me feeling upside down and backwards.  Here’s how I’ve been working through the quakes of change again..

Gary has always been my protector.  No matter how we rearranged our bedroom furniture, where the sleeping bags were in the tent, or how hotel rooms were laid out, he always wanted to sleep on the side closest to the door.  When walking down a sidewalk, he’d move to the side nearest the street.  "The side of greater danger,” as he put it. 

2000 - Photo by April

2000 - Photo by April

One of Gary’s roles was to protect me.  God ordained that husbands “love their wives as Christ also loved the church, and gave Himself up for her (the church).”  (Eph.5:25) What does it mean to “love a wife as Christ loved the church?”  Lots of things, but the main point, is to love sacrificially.  Jesus laid down His life for all who would believe and become His Church.  He died to protect them from eternal death.  For a husband to love that way, means he’ll protect her, get between his wife and harm, “take the bullet” for her, if necessary. 

My hero - 1976

My hero - 1976

So, I struggle with having to take on so many of Gary’s roles.  BUT, here’s the really great thing.  My primary role as wife is to be Gary’s HELPER.  When God made Adam, he decided that Adam wasn’t complete without a helper.  He made a suitable helper for man.  Woman.  (Genesis 2:18) Then he made them One, husband and wife.  What could be more HELPFUL than protecting a helpless husband during an earthquake? 

God never leaves me in a quandary.  His Word is all I need for navigation through this life and it does not contradict itself.


Just a note to parents…I can’t resist saying that our culture is frequently promoting ideals that are opposite from Biblical roles.  Women are doing the rescuing of the men in many movies and tv, and though I have nothing wrong with a woman learning how to defend herself, and doing so, beware the constant message we may be giving to our young ladies through the media.  Ever After is a movie that comes to mind.  Cinderella rescues Prince Charming from the thieves, and then rescues herself from the bad guy. Prince Charming shows up to say “I love you” but that’s about it.  There are media examples on both sides, but just be aware of it.  More and more, the roles are disappearing all around us, regardless of the standard set forth in God’s word which has not changed.

 

 

Tidbits & Treasures 02/18/14

I Peter 1:11

I Peter 1:11

Two words…

I was reading my Bible this week and ran across a note I’d written in the margin.   It says, “Cup & Glory.”    It’s from the book, “The Cup and The Glory” by Greg Harris.  The ‘cup’ of suffering is linked to the ‘glories’ to come, and this theme is traced through the Scriptures.  Dr. Harris was motivated to study this subject as a result of his own suffering.  I have jotted these two words multiple times over the years next to verses containing this theme.  Contrary to popular belief, it seems that the path to glory is laced with suffering, but the benefits are amazing.

He introduces his book like this.  “What follows are some of the lessons He (God) taught me from this, some of which I was most reluctant and slow to learn.  They are not necessarily for everyone, but rather are intended for those who are presently struggling with suffering in some area in their life, especially the painful perplexity of why God would allow them to experience such depths of misery, when we know He could remedy it whenever He wanted.  Hopefully, it will offer new insight into the graciousness of God as He lovingly uses suffering to draw us nearer to Him and to conform us closer to the image of Christ.”  Pg. 18

 “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, confirm, strengthen and establish you.” 1 Peter 5:10


"A Fine Romance"  Susan's diary of her visit to the English Countryside. 

"A Fine Romance"  Susan's diary of her visit to the English Countryside. 

Inspired by Susan

Let me introduce you to one of my artistic inspirations, Susan Branch.  We both share a love of being home, hand-crafted art, journaling, and watercolor painting.  We both came to the craft late (well, I came back after a lengthy break).  Maybe you’ll have fun exploring her website if you like creative ideas, and ways to make your home cozy and beautiful.  She has great, simple recipes too.  Her blog is loaded with great photos, illustrations, and vignettes of life on Martha’s Vineyard Island.  www.Susanbranch.com


A Sign

I’ve been reading about the Israelites’ great EXIT from Egypt.  Moses was hand-picked by God to lead His people out of their slavery and into the Promised Land.  He had his doubts and fears about this great task.  “Who am I that I should go to Pharaoh and bring the children of Israel out of Egypt?”  Exodus 3:11

God answered, “But I will be with you, and this shall be a sign for you, that I have sent you…when you have brought the people out of Egypt you shall serve God on the mountain.” Exodus 3:12 

Moses had the assurance that he would encounter the presence of God, and THAT would be the sign that God had sent him.  After that, he was to lead the people in worship.  That’s all he needed to know…God would be with him and He was, leading, providing, and interacting with them all through the wilderness.  I want to live like that.  Believe, trust, obey, see God at work, and worship. 


Looking good...my twin bed on left, Gary's Hospital bed with special air mattress. on right.  The lump at the footboard is the pump.

Looking good...my twin bed on left, Gary's Hospital bed with special air mattress. on right.  The lump at the footboard is the pump.

Medical Air Mattress…a solution for dementia patients and their spouses.

3 years ago, when Gary began to be much more sedentary he developed some bed (pressure) sores on his heels.  At first I didn’t know what they were, but basically they looked like big blisters.  This happens when the body isn’t moving enough and one part is pressing down on the bed for too long.  The blood doesn’t circulate there, and a sore can develop.  It can happen really quickly.  It’s even worse when there’s weight loss and less padding on the bones, so the pressure is greater.  This can be a huge problem, and it is not uncommon for dementia patients to die from systemic infections, that start with a pressure sore.  So, I began setting my alarm at 2 hour intervals during the night so I could get up and roll him over.  As you can imagine, this was exhausting and I began to do research to see if there was a better way to keep him protected.  Well, I found the most amazing thing!  I know some of my readers are caring for a loved one and will want to know about this.  It’s a circulating air mattress.  It has 15 channels of air, and a small motor which deflates and inflates these channels in sequence.  You can set the timing and duration.  It’s a twin sized mattress that fits his hospital bed (in fact is designed for hospital use) but for the first 18 months, I had it next to my twin mattress on our King box springs.  You never would have known it was not a regular King sized bed.  Now I have my twin bed pushed up to Gary’s hospital bed.  But the mattress has been chugging along, pumping air, 24/7 giving us both a good night’s sleep for about 3 years.  Pretty cool, huh!  Now that Gary has lost so much weight we have begun to change his position again when in a recliner chair, but in bed, his mattress keeps his skin from getting damaged.  It was about $1500, but if you already HAVE the pressure sores I think Medicare will cover some or all of the cost with a Doctor’s order.  I got ours after the sores were healed, but it was a very good investment and I think it has really saved Gary much pain and misery.  There are lots of choices, but here’s the one we got:  http://www.medicalairmattress.com/mdt24supradps.html  Good Night Zzzzzzzz……

For more info on adapting your home to care for a loved one...click HERE

Eight

Shortly after my last post on Friday, the 24th, something went haywire with the text.  You may have missed it, or shared it, and so, now that it appears the problem is fixed, I'm reposting.  The thing is, I had no other copy of it so I rewrote it.  Since I am a bear of "very little brain" I'm sure this new rewritten post is slightly different than the first.  Please don't feel the need to reread it, but I just wanted you to know.  I've deleted the messed up post and this will replace it.  I've saved the comments at the end of this post, and you may leave new ones if you wish at the end. 


This begins the 8th year of Gary's Alzheimer's Dementia.  ONE PHRASE and ONE PHOTO from each year were selected to describe the progress as time marches along.  For those who have asked recently how Gary is, this will get you up to speed.  Please don't be sad about this.  Illness and decay are part of the human condition and there is much to be gained by facing reality head-on.  My comments on our journey are at the end. 


2005 Grandpa, Grandma and Micah

2005 Grandpa, Grandma and Micah

 

2005

Blissfully Ignorant

As we held our most recent grandchild at the time, we had no idea what was ahead.


2006 Grand Canyon

2006 Grand Canyon

2006
Something’s Wrong

Gary and I both noticed little lapses in his short-term memory and slight confusion were gradually increasing.  Even with missed appointments, slowed thinking and getting mixed up about things he should have known, it never occurred to us that there was something physical going on.  We blamed it on his heavy workload.  His face was less expressive as the year wore on.

“I’m loosin’ it, Laurie!” he’d say.


2007

2007

2007

Dreaded Diagnosis

We began seeing doctors late in 2006 and after what seemed like an eternity of testing, Gary received the diagnosis, “You have an Alzheimer’s type dementia.”  This was a scary time for both of us, but getting an answer was a relief of sorts and we spent much time in prayer together.  In July, we closed our business, and Gary stopped driving.  He bore it well. 

He prayed, "Help us be responsible, and draw favorable attention to what You're doing here."


2008 Griffeth Observatory

2008 Griffeth Observatory

2008

Together Time

With Gary not working we were able to make lots of memories.  We took day trips around town, Huntington Gardens, a trip to Florida to see our daughter’s family, and we even watched a missile launch at Vandenberg.  We couldn’t be on the go every day of course, but Gary seemed to enjoy the activity.  It gave him a sense of getting up and getting ready to work.  He couldn’t stay alone anymore for his safety’s sake. 

During these months, he would occasionally forget who I was.  He thought I had a “twin sister” or something.  He kept a letter in his wallet that he wrote to himself, at the suggestion of, our pastor, Rick.  In it, he had stated who he was, who I was, and our family members.  (Someday, maybe I will write a post about this precious letter.)  He would read it, when feeling unsure.  It gave him his bearings and comfort.


2009 Observing the projects

2009 Observing the projects

2009
Change

It became obvious that we needed to make a change in our living situation.  Our home, yard and koi pond were too much for me to manage, since Gary was now incapable of maintaining them.  Many friends and family members helped us get our home of 34 years ready to sell.  Gary enjoyed seeing familiar faces and watching the projects going on around our house. 

We sold Gary’s truck and ski boat and started having garage sales and selling Electrical inventory and tools.  He knew the truck was sold, but then forget, and get concerned when he couldn’t find it in the driveway and when he saw a white work truck, on the freeway, he’d say “I think I saw my truck.”  He really, really missed his truck.


2010 Moving day

2010 Moving day

2010

Leaving the Familiar

In June we drove away from the home we lived in our entire marriage.  Packing and moving day went really well, and Gary rode in the U-Haul with our son-in-law.  It was a fairly easy transition for him.  He never asked about going back to our old home but one time he said he missed the fish pond.

2010 Our new home

2010 Our new home

We settled in to our new condo.  It would be easier for me, and safer for Gary.  He enjoyed the many walks around the neighborhood, stopping to pick up a twig or pull a weed in someone’s garden.  We took more day trips and Gary ran errands with me enjoying the car rides.  The change was stimulating for both of us, and yet Gary had some physical declines immediately after the move that never improved.  He wandered off 2 times but both were within my sight and easily resolved. 

Our church began an Alzheimer’s support ministry in the fall which we have been part of ever since.


2011

2011

2011
Help Needed

As Gary’s world was needing to become simpler, my functionality was being challenged.  The activity of busy grocery stores was becoming too much for him to handle.  In Trader Joe’s he once said, “This is hard for me.”  Neither could he safely stay alone, or sit in the car, or wait while I tried on clothes or went to the dentist.  So for several hours a week, I engaged a care giver and/or he went to the Adult Day Health Care Center.  This was all harder for me than him because I hated letting go, especially of his personal care.  But Gary was cooperative and made another adjustment.

We went to Florida to visit our family, where he enjoyed watching the grandchildren, but it was difficult in the airports and boarding planes. 

He still enjoyed working with a screwdriver, even if unconventionally, and manipulating “gadgets” such as nuts and bolts, or carabineers and pieces of rope. 

I began writing a blog about our life with Alzheimer’s.


2012 Lombardi Ranch

2012 Lombardi Ranch

2012

Remembering & Living

This year brought the end of the Adult Day Health Care.  Gary needed too much help for the staff to provide, so we increased the home care.  Gary’s occasional lack of balance resulted in a couple of tumbles and needed support when walking.  We worked hard to retain the memories, by making memory books for him and playing family movies.  Visits from old friends were met with a smile of recognition and sometimes a handshake.  There were many outings this year with Gary’s wonderful new caregivers.  He went to the mall, the lake, Vasquez Rocks, and the billiards room.  By the end of the year a wheel chair was brought along in case he got too weak, or too imbalanced to walk. 

In the fall, we signed Gary up for Hospice and he has been receiving those benefits ever since.  He has to be recertified every 2 months. 


2013 Our 38th Anniversary

2013 Our 38th Anniversary

2013

Simplify

Gary’s physical problems increased to the point where I needed MUCH help moving him around the house and helping him walk.  We had a live-in caregiver for the first half of the year, and made many adaptations to our home to make things easier for both of us.

There were a couple of outings in the Spring, but most of the year was spent at home.  Gary became excessively sleepy spending most of the day in bed or a recliner.  Meals took 45 minutes due falling asleep during the meal.  Gary needed two people to help him go on a walk.

I did more and more things without him.  Family birthdays, church, etc., are too taxing for his tired body and mind.  I don’t think I will ever get used to going to things alone while he is home with a caregiver. 


2014 A rare moment with eyes open.

2014 A rare moment with eyes open.

2014

???

 I don’t know what this year will be like.  Right now, Gary only opens his eyes for a few minutes at a time and only a total of 30 minutes a day (on a good day).  He sleeps about 22 hours, only waking up (but eyes shut) to eat, and be walked to the shower, recliner or back to bed.  He is gentle and peaceful.  He rarely speaks.  Maybe twice a month, he’ll say a word or two.  They are ALWAYS pleasant words.  “Yeah.”  “U-huh.”  “I will.”  “Hi.” 

I may not know when he is hurting or what he needs, but we try to treat him the way we would want to be treated and entrust his care and comfort to the Lord. 


8 years is a long time.

Will there be a 9th, 10th, 11th?  I don’t know.

Remember Gary’s prayer?  He asked God to

"Help us be responsible, and draw favorable attention to what You're doing here."

That is our goal.  You can’t miss the many good things that have happened because of these I difficult years.  Strengthened relationships, God’s love, kindness and care on display, joyful moments, and a greater longing for Heaven to name a few.  There’s a purpose for every day of those 8 years.  BUT, the days are wearying at times and mingled in are moments of crying out to God and asking Him “How much longer?”  

Thousands of years ago, Kind David asked the same questions that those in a trial (and their observers) ask. While he suffered, he turned to God for the answers.  He focused on who God is, and by trusting in God’s salvation, loving kindness and bountiful care he found joy.  Here is his song:

"How long, O Lord? Will You forget me forever?
How long will You hide Your face from me?
How long shall I take counsel in my soul,
Having sorrow in my heart all the day?
How long will my enemy be exalted over me?

Consider and answer me, O Lord my God;
Enlighten my eyes, or I will sleep the sleep of death,
And my enemy will say, “I have overcome him,”
And my adversaries will rejoice when I am shaken.

But I have trusted in Your loving kindness;
My heart shall rejoice in Your salvation.
I will sing to the Lord,
Because He has dealt bountifully with me."  Psalm 13

I have been there…asking “How long, O Lord?”  and thankfully, the Lord has strengthened my faith every time.  He reminds me of how he has watched over us, with love and kindness during these years.  A couple of books I’ve enjoyed are: “How Long, O Lord” by D.A.Carson, and “Treasury of David” by Charles Spurgeon (Chapter XIII) 

If I can encourage you in any way, send a private message to me via the CONTACT tab at the top or leave a comment on this blog.


I PASTED THE COMMENTS FROM THE MESSED UP POST RIGHT HERE (you can leave new comments at the end...

Jerri Whitten DiPrima: 

Lori, it is amazing and obvious that God has chosen you and Gary to get help started in our church home for others walking this most difficult walk. I would love to have had help like this for my Mom and Dad. No one understands how much this disease affects not only the immediate family but old friends work cohorts, and others unless they know someone who has had to walk through it. I know you have been chosen because of your faith and strength and obedience to our Father but it is a heavy cross to bear... Gary's prayer is being answered and God is indeed faithful. Thank you.

Laurie:

Thank you Jerri. I just got back from our monthly ministry meeting. One of the things we talked about was the idea, from 2 Corinthians 4 that "this momentary LIGHT affliction is producing and eternal WEIGHT of glory" It was so encouraging.

I think as the baby boomers age, that this ministry will be all the more useful with so many folks coming down with Alzheimer's.


terry pagach:

As believers, God's ways are mysterious but good. He glorifies Himself and comforts at the same time! Thank you, Laurie, for sharing God's steadfast love and constant faithfulness. Knowing that He didn't spare his own Son from suffering, we can expect it. I'm grateful that His word has sustained and strengthened you both! Mick and I love you both and pray for you both. May 2014 be the year our Lord returns and brings [all] his sons [children] to glory. Loving Him along with you because He first loved us! Thank you for pointing us to Christ...even in suffering.

Laurie:

Gary would LOVE for 2014 to be the year Jesus returns! Meanwhile, we pray for endurance and joy. Thank you for your sweet friendship and prayers.


Glenna's Page:

Thanks for this encouraging summary of your journey as a couple, Laurie! We are praying for you all.

Laurie:

Love you too my dear! Say hi to the fam.


Georgene Girouard:

I've been blessed to look back at your 8 years. My heart is amazed at the grace God has given you to care for your husband Laurie. Your commitment to him encourages me so much! God bless you... I mean REALLY bless you Laurie!

Laurie:

I DO feel blessed. Thank you. I'm constantly amazed at all God has done. I'm sure you could share a zillion things too, from your own journey.
Hope we get to meet one day.


Lukas Vandyke:

Thank you for writing this. Your life is always an encouragement. =)

Laurie:

Thanks Lukas. God is faithful.


clydetweets:

I'm encouraged by your steadfast faith in the Lord Jesus, Laurie. We are praying God would bless you with more confidence in Him. Have you ever read a book called Spectacular Sins? It's by John Piper and it's free as a .pdf from their website.

Laurie:

Thank you for your prayers. I'm assuming that "Spectacular Sins" refers to the curses on this earth, which include sickness and death, which are used by God, for our good, and to display His glory. Not to good with the roots, but guessing... "spectacle, or inspect, to see"?? Just wondering. Will have to check it out, because I like to read Piper. Thanks for the recommend.

(Sing) "Tum-Tum-Ta-Tum"...39 Years Later

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Yesterday we celebrated 39 years of marriage... Family came over.  They showered us with flowers and cards.  We ate Tri-tip and BBQ Chicken.  Gary stayed in bed until everyone arrived at 5:00, so he'd be well rested for the evening and hopefully connect to the goings-on.  On the special days...it's easy to give in to pity parties, wishing things were different, but making a new memory is great medicine for me on Birthdays, Anniversaries, Christmas.  One thing I've learned over the last 7 years is that it is really important for ME to celebrate things REGARDLESS of Gary's ability to respond.  If he IS taking in his surroundings, then that's even better.

So, we had a party.  Gary opened his eyes once or twice during dinner while he munched his Steak, and Garlic Potatoes, but for the most part, he remained non-communicative.  Right after dinner we settled in by the TV so I could show everyone Gary's present from me.  I made him a DVD with the audio of our wedding with photos.  During the hours I spent putting together the video, editing the photos, and listening to the ceremony,  I was surprised by the effect it had on me. I was so happy, listening  to Gary repeating his vows.  I miss hearing his voice now.  I cried as I listened to the challenges laid out by our Pastor,  to love unselfishly no matter what.  I am faced with that choice every day.  My heart was flooded with gratefulness for 39 years.   Gary gave a gift to me last night too.  Toward the end of the video, he opened his eyes and watched for a few minutes, and even made some sounds, trying to speak.

Pastor Travaille prayed this poem for us.  God has truly answered this prayer for Gary and I. 

 

Oh Perfect Love

All human thought transcending

Lowly we bow in prayer before Thy throne

That theirs may be a love that knows no ending

Whom Thou forevermore doest join in one.

 

O Perfect Life

Be Thou their full assurance

Of tender charity and steadfast faith

Of quiet hope and gentle, brave endurance

With childlike trust that fears not pain nor death.

 

Grant them the joy that brightens earthly sorrow.

Grant them the peace that calms all earthly strife.

And may they ever know a faith in Christ as Savior

That dawns upon eternal love and life.

Through Jesus Christ our LORD

Amen

Dating - 1974

Dating - 1974

 Anniversary Celebration - 2013

 Anniversary Celebration - 2013

Lots of people ask me "How do you do it?"  "How do you stay joyful?"  Let me say that there's nothing special about Gary and I.  We made a promise to God, in 1974 in front of each other.  We prayed for God's strength and blessing, and we meant it.  We didn't know that I would get cancer, and then that Gary would get Alzheimer's, but we knew that no matter what, God would expect us to keep our vows.   And you know what?  He's the one that has made it happen.  Gary and I are just sinners, saved by God's grace.  My joy is not natural.  It's from Jesus' love for me, and the fact that we are just passing through this life.  Our marriage was grounded in that love.  I posted the wedding DVD I made for Gary if you want to watch the photos and listen to the ceremony.  Hopefully it will encourage you.  The music sound is distorted, but you can hear Pastor T, and us just fine.  It's 28 minutes long.  At the end is a doodle type note Gary wrote me just for fun. 

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Snowflakes and Me

Me and Snowflakes....we go way back.  Badger Pass at Yosemite sometime around 1956.  I still remember the big 3-D snowflakes on the front of the lodge. 

Me and Snowflakes....we go way back.  Badger Pass at Yosemite sometime around 1956.  I still remember the big 3-D snowflakes on the front of the lodge. 

Here in Southern California the forecast for today is: 73 deg.  Wishing we had a bit more of a typical winter here, I got to thinking about colder Christmases.  My dad and I were recently reminiscing about the coldest skiing experience we could remember and we agreed that it was at Bridger Bowl, Montana.  He was in his 80's at the time.  We were riding the lift together and absolutely miserable.  The wind was blowing right through our ski clothes.  I don't remember my dad ever being cold.  Growing up, he always tried to make my brother and I feel warm, and never complained about being cold himself.  He used to let me put my hands on his coffee cup in the lodge to warm them up.  One time when my brother and I were kids I remember crying as my toes thawed out at the end of a fun day of skiing.  It was in Aspen, Colorado, and there were ice crystals in the air.  It looked like glitter as I looked out the car window enjoying the heater.  Even my painful toes didn't stop me from taking it in.  I still remember how beautiful it was.  When snowflakes drift down and land on your jacket, they truly are beautiful.  Only in the really cold, do they last very long once they land.  I'm so glad I had the opportunity to see snow on the many ski trips we took.  I gained a healthy respect for the cold too, and the powerful changes that come with winter.

These amazing macro photos of snowflakes will blow your mind.  These beautiful creations require very cold temps. In fact, the photographer has to work fast to capture them before they begin to melt.  For centuries, it's not been possible to see the detail.  How wonderful that now we can see the intricacies.  I was reminded of the passage in Job describing God's powerful hand in the weather and seasonal changes.

"God thunders with His voice wondrously, doing great things which we cannot comprehend.  For to the snow He says, "Fall on the earth," and to the downpour and the rain, "Be strong."  He seals the hand of every man, that all men may know His work." 

"Then the beast goes into its lair and remains in its den.  Out of the south comes the storm, and out of the north the cold.  From the breath of God ice is made, and the expanse of the waters is frozen, also with moisture He loads the thick clout; He disperses the cloud of his lightning."

"It changes direction, turning around by His guidance, that it may do whatever He commands it on the face of the inhabited earth.  Whether for correction, or for His world, or for lovingkindness, He causes it to happen." Job 37:5-13

1977 Gary at June Mountain, California

1977 Gary at June Mountain, California

As you can see...Gary's had a few encounters with the little flakes too. Most of them had melted into his mustache and we always laughed at this picture. Though we'll never be snow-skiing again, we're still enjoying some big snowflakes that decorate our room in this crazy warm weather.  I had no idea that one day I'd be using an old college art project as a memory aid for my husband, whom I hadn't even met when I created it.  I hang these seasonal banners in our room to remind Gary what time of year it is so the "Winter" sign is temporarily pinned on. 

I never noticed it before today, but I think I must have been influenced by the blue snowflakes on the ski lodge as a little girl! 

1972 College design project - 2 dimensional design for use in my home, constructed. This winter banner is one of four.

1972 College design project - 2 dimensional design for use in my home, constructed. This winter banner is one of four.

Hand appliqued felt snowflakes. 

Hand appliqued felt snowflakes. 

Please know that Gary and I hope you have a wonderful Christmas celebrating the birth of our savior, Jesus Christ.

From our house to yours, we send our love.

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"Fellowship of Suffering"

Like cold water to a weary soul, so is good news from a distant land.  Proverbs 25:25

Like cold water to a weary soul, so is good news from a distant land.  Proverbs 25:25

I am suffering.  It's not always intense.  It's not all the time, but I get hit with waves of sorrow as I watch the deterioration of my dear Gary's mind and body.  What encourages me most?  The comfort that comes from others.  In fact, we (my family and I), have experienced many varied blessings that ultimately come from God's care.  Reminders of what is true about God and His promises to His children, beautiful music that lifts my heart from despair to joy, opportunities to serve and enjoy this big beautiful world are everywhere. 

In 2 Corinthians 1, Paul says,"  ...the God of all comfort, who comforts us in all our affliction SO THAT we will be able to comfort those who are in ANY affliction with the comfort with which we ourselves are comforted by God."  Many folks who have served us, have never experienced anything like our trial, so don't ever think that just because you've never suffered from dementia in a loved one, that you can't offer encouragement to someone who's suffering.  According to Paul, ANY suffering qualifies ANY believer to offer refreshment in Jesus' name. 

But THIS post is about those who are going through similar difficulties.  I want to tell you about three friends.  God has been blessing me in a way I didn't expect by including me in a very special "fellowship."  Let me tell you how it started.   A bunch of us girls met in a Baptist church over 50 years ago.  In Junior High we spent many hours at slumber parties, pool parties, and summer camps together.  Oh the Laughter!!!  Over the years we drifted apart, 20 years, 30 years and 40 years for one of them, since we've been in communication.  Now we live too far away to spend time together but thanks to Facebook and email, we are back together.  We are reunited in a sort of "Fellowship of Suffering."  One of these friends is a recent widow.  Another has a husband who is loosing a battle with cancer.  Another has a husband recently diagnosed with cancer. 

We're all here in this camp photo.  I'm in the middle row, 2nd from the left with my white "babushka" scarf.  My 3 friends can remain anonymous. 

We're all here in this camp photo.  I'm in the middle row, 2nd from the left with my white "babushka" scarf.  My 3 friends can remain anonymous. 

Who would have thought that after so long, we'd be regularly communicating.  These women know Christ.  They are ministering to me by reminding me of His great love and care.  They are not just "playing church" as I suspect many of us were as young teens, but have matured in to women of God.  We center our conversations around the relationships we have with our Savior.  They each know the loss, pending loss or potential loss of a husband, like me.  "Like me."...  There is a bond between us.  It is special.  It comes as a surprise to me, that God would bring back these friends from so long ago to be comforters in my life. 

Camp Rancho at Forest Home. 1966

Camp Rancho at Forest Home. 1966

None of us are comfortable with the idea of death taking our dear husbands.  Death is not just "a part of life."  Whether it threatens and goes away, gradually overcomes, or suddenly crashes in on our lives, we resist it.  Life is a precious gift.  Because God saved us, we are able to meet these kinds of challenges with inner peace and joy.  None of us would say we have that kind of strength in ourselves apart from Christ living in us.  A quick request for prayer via a Facebook chat, or an email to a friend can lead to the sweetest dialog with true encouragement because we remind each other that our good God is in control and we can trust Him.  Little explanation is needed with these 3 because they understand me in a unique way.

I am quite amazed at the surprises along the way as I "suffer."  One of the dearest is these ladies' ministry to me.   

"Strategery" Session

 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails." Prov.19:21  

 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails." Prov.19:21  

Recently Becky (our caregiver) and I wrote an article for the newsletter for our Alzheimer's ministry group at church.  We called it "Logistical Strategies."  It's about adapting to the changes in our loved one.  I'm happy to share the content here because there are many photos of what we are doing to make things easier.  If you are reading this because you know and love someone with dementia, I hope this is super helpful.  If you are reading this because you love Gary and I, thank you for caring.  L.P. 

Logistical Strategies

(from the Alzheimer's. Ministry Newsletter, Grace Community Church)

Changes ahead.  Seven years ago when Gary was diagnosed with A.D., I knew changes were coming.  I knew Gary would get worse, not better.  I knew I didn't want to embrace the unfamiliar.  Wise friends and loving family have advised me at every step of the way to face the facts, accept the inevitable and try to be "ahead of the game" with our preparations.  There have been scary moments, but always, I have found that God  is right there guiding us along, and a constant companion.  Most of the time, by grace, I am able to bask in the security of God's good providential care.  "I will never leave you or forsake you" He said.  "I will incline my ear to you, when you cry for help" and just like David, He has been listening to me and caring for Gary and I. 

Life has not been without it's "tumbles" and "messiness" at times, but overall, we have continued to "adjust" to the NEW and DIFFERENT, which has given comfort to Gary and peace to me.  Be kind to your Loved One by adjusting his/her environment to suit him/her, give the gift of time to your family and friends by simplifying your life, and save own back by making use of equipment and lifestyles that fit your new phase of life.  Everyone's needs are different of course, but now that Gary is in Advanced Stages, we've been through a lot and want this personal look to serve as a visual aid in your planning and strategizing for your loved ones. 

Becky's photos and comments give the care giver's perspective so together we'd like to encourage you.

The biggest change was a new home.  One that I could manage.  I wish we'd moved sooner.  Generally, I'd say make adaptations sooner rather than later so your L.O. (Loved One) can adjust before the disease progresses.  Try to stay ahead of the needs. 

So, to you, friend, I say..."Welcome.  Come on in and I'll show you around our house!"

(Use the arrows at the edge of each photo below to advance to the next one.) 

Wondering where to start?  A wise person said...Ask yourself..."WHAT'S THE WORSE THAT COULD HAPPEN?"      

"This question will force you to look at the worst case scenario then work back from there.  It's forcing yourself to look at what could go wrong and finding strategies to do your best to prevent this."  

Take for example the tendency for falling which is usually the first symptom that something is amiss.  What is the worst that could happen?  A fall and hip fracture.  What room in the house is this most likely to happen?  Bathroom perhaps.  So we take steps to get rid of the throw rugs, we install bars etc.  You get the picture.   Whatever solutions you come up with, you've faced the worst possibility and now have ideas to stop or delay it becoming an eventuality.                 

Some of the health aids I found online, some through friends, or home improvement stores.  Many Senior Centers have volunteers who will install handrails, and ramps. Medicare provided some of the equipment too.  You don't have to make all the changes at once.  Prioritize the things you need and get the most pressing needs covered first.  When you must adapt things in your home, embrace the idea.  Look at change as an adventure.  Have a discovery attitude. 

"If you are a saint, God will continually upset your programme,

and if you are wedded to your programme,

you will become the most obnoxious creature under heaven,

an irritable saint." 

Oswald Chambers, Running Today's Race.

Photos by Becky S. and Article by Becky and Laurie

"Goodbye Jason"

Gary and Jason on our daily walk around the neighborhood. 

Gary and Jason on our daily walk around the neighborhood. 

I said 'Good-bye' to Jason this morning.  I can't imagine the last six months without him in our home.  He came to us at the perfect time, and gave freely of himself to serve us in more ways than I can count.  He is truly a gift from God and will forever be in our hearts.

As he travels, and always, my prayer for him is a blessing from Numbers 6, 

"May the Lord bless him and keep him.  May the Lord make His face to shine on him, and be gracious to him.  The Lord lift up his countenance on him, and give him peace." Numbers 6

I'm looking forward to seeing how the Lord will use him as he spends his life serving others in the name of Jesus.   

Gary's schedule is done, the care giving is lined up, and our plan is finished.  Our needs will likely change again, but for now, we're all set.   Again, the Lord has provided just what we need at just the right time.

For the story on how Jason came to us click HERE

For the last blog post about 'transitions' click HERE 

"I gotta get me some SKILLS!"

Two big changes are on the horizon.  I am not looking forward to either of them.  One is going to happen quickly, like flipping a light switch off, and the other one is more like a dimmer switch, being turned up and down erratically.  The instant change is going to happen in about 2 weeks.  The other one has already begun. 

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Change Number One:

Our dear Jason, who has served us so unselfishly for 6 months, is going to be leaving.  His work needs are changing, precipitating his move back to Florida.  I can't say enough about his kindness to us by doing all the "heavy lifting" for me.  His jokes with Gary, his professional care for him, and the laughter will be missed.  He has become like one of our own. If you haven't read the amazing story of how he came to us, Click HERE. 

Becky and Karl, on one of their many walks with Gary. 

Becky and Karl, on one of their many walks with Gary. 

Change Number Two:

Gary's needs are changing too.  Alzheimer's Disease is different with everyone.  With Gary there have been some plateaus, but mostly it's been a steady progression of decline.  As the years have rolled on, (7+ now) the progression seems faster.  It has been a month since Gary has said anything to me.  He rarely looks at me.  He is only awake about 6 hours a day.  But the worse thing seems to be his balance, and maneuverability.  The mobility issues are having the biggest effect on me.  A person alone has a very hard time walking Gary from one room to another or helping him get seated.  Standing him up is lifting dead weight.  Once on his feet, he can go for a walk with support on each side, but inside the house, it's all scissor steps, distractions and confusion so a single person has a difficult time walking him. 

So Now What?

The caregiving is going to look different and the team is going to be bigger.  ("We're gonna need a bigger boat" JAWS)  I'm using the last couple of weeks with Jason here, to try several things.  He is helping me with the transitions.  We have new equipment, and procedures that I must get proficient with.  We are trying new schedules, by condensing activities.  I am trying new "locations" for Gary during the day.  Ironically, by trying out new methods, I'm getting sore muscles, or feeling overwhelmed because of all the wasted motions, or wrong way to do things.  I'm learning though,  by tweaking HOW I do things, and in what order I do them, it's getting easier every day.

Figuring Things Out

I thought some may be interested in the process so I'll try to share some of it with you.  If you have a loved one in an advanced stage of dementia, you may find it helpful, and if not, please pray for Gary and me.  I am in great need of wisdom and grace.

Rolled up blanket to simulate torso.  It's actually very comfortable and I think Gary enjoys riding in the "hammock." 

Rolled up blanket to simulate torso.  It's actually very comfortable and I think Gary enjoys riding in the "hammock." 

This is a Hoyer Lift.  It's the first one I've ever seen.  If I can get proficient using it, work out the logistics of where to keep it, how to move it around, and how to place Gary in just the right place on the "hammock", then I (or any caregiver) can use it to get Gary into and out of bed, and into a wheelchair.  Without it, you need two people.  (Tried it again this morning and it was much easier than last time!)

I still have a twin bed pushed up next to his.  I'm resisting moving them apart.  Love being near. 

I still have a twin bed pushed up next to his.  I'm resisting moving them apart.  Love being near. 

Gary's hospital bed is on the right.  He has actually had it for awhile, but now it's getting more use.  Giving him dinner in bed eliminates the long difficult walk to bed at night when he's sleepy.   I am learning to use the controls and the side rails to my advantage, to protect my back, and Gary as I help him with various things. 

In pulling up a movie for this photo I came across Driving Miss Daisy.  Well, as usual, it sucked me in and I've had it on in the background all morning, and yes, it still makes me cry at the end.  Especially now.

In pulling up a movie for this photo I came across Driving Miss Daisy.  Well, as usual, it sucked me in and I've had it on in the background all morning, and yes, it still makes me cry at the end.  Especially now.

This is a bed table.  We watch a movie, or live streaming with our dinner on the laptop.  Well, Gary listens, and I watch while I feed him, because he has his eyes shut during meals.  Don't know why, but I suspect it's too many senses going at once and he can shut out sight easily.  After he eats, he usually watches with me for about 30 minutes.  I treasure this time with him because we are doing something "together."  After I brush his teeth, I sit next to him on my bed, and work on a project or read till he falls asleep at about 7:00.

This is my pile of notes.  After a family conference a few weeks ago, we decided that I need to tackle 3 areas.   

1. Gary's well being.  What must be done, to promote his...

PHYSICAL comfort and safety

MENTAL stimulation, security, and relationships

SPIRITUAL life

2. Laurie's well being.   What must be done, to promote my...

PHYSICAL health

MENTAL stimulation, security, and relationships

SPIRITUAL LIFE

3. The finances needed to pull this off!  The Guys (sons-in-law), will help me figure this part out.

Next, I put an activity with each section.  For instance, for Gary's Physical comfort he does best with at least one 15 minute walk each morning, certain foods, and lots of naps.  To keep him safe, he can't be left unmonitored ever, and must always have 2 helpers for walking, etc. 

Time and schedules come next.  Once all our needs were written out, I needed to lay out a weekly schedule fitting caregiving into time slots. I've been brainstorming with our existing caregivers, about the changes I'm trying before I settle on a schedule.  My goal is to have the schedule figured out in a few days, so I can start lining up more help.

This is only a fraction of them. 

This is only a fraction of them. 

Getting there...but still using pencil so I can erase. 

Getting there...but still using pencil so I can erase. 

All For Good

We recently had a short visit from our daughter, April.  It was a precious time.   I don't know what I'd do without the help and encouragement of our family.  I am not in this alone.  I am confident that ALL these changes will work out for good for us.  I'm reading a great book on Romans 8:28 and plan to write a review for my Blog soon.  Being in the hands of God is a good place to be.  I'm just doing the next thing, which right now is to get Gary moved to the bedroom.  "Hoyer Lift, I will take charge of you!"

A couple times during April's visit we could tell Gary recognized her. 

A couple times during April's visit we could tell Gary recognized her. 

There was a special visit with my parents who live across the street.  Here's 3 of the generations together.  My dad's 95!

There was a special visit with my parents who live across the street.  Here's 3 of the generations together.  My dad's 95!

I had a wonderful time on my birthday weekend with Sarah and April at the beach for a couple of days. 

I had a wonderful time on my birthday weekend with Sarah and April at the beach for a couple of days. 

Our Little "Band of Brothers"

I had the most wonderful morning.  Once a month, we (Gary and I and our local family) are able to attend the Alzheimer's/Dementia Support Ministry at our church.  Things are getting pretty hard with Gary lately so today especially,  I welcomed the time with those who are in the same situation. 

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​For us, it starts the night before.  Gary must get shaved, the wheelchair has to be loaded into the car (by someone strong, since it's a heavy one), and I must think through the morning schedule.  Getting Gary into the car can be challenging. (50% of the time he will not understand about stepping into the car and it can take 5-10 minutes getting him "folded in" to the passenger seat.)  So, today our son-in-law, Ryan came to help get Gary into the car. 

​We have a 20 minute drive which Gary thoroughly enjoys and once at church, we are greeted at the car by helpers who help us by getting Gary out of the car, assembling the wheelchair and getting us settled inside. 

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A light but healthy breakfast is served and boy does it taste good, because I didn't have to fix it!  It's one less thing to do during a busy morning.  The coffee is SO GOOD!  Some of the ladies and family members provide the breakfast.  The centerpiece always has an encouraging verse or quote to remind all of us that we are in the good hands of God. 

Once we've had some munchies we divide into our Loved Ones and Caregivers groups.

The Loved Ones Group roughly follows this schedule.

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  • 9:00am-9:30am > Breakfast & Fellowship
  • 9:30am-10:00am > Movie (usually about God's creation)
  • 10:00am-10:30am > Go for a walk around campus
  • 10:30am-11:00am > A time of worship led by different folks, either with piano, or guitar  (They emphasize the older hymns since these are deeper in the long term memories.) 

​We have very loving helpers who watch over my husband and the other gentleman, during the meetings.  They often bring their kids along who love to help out by getting another bagel or strawberries for someone.  They are learning to serve others.  Even though there are 15-20 caregivers/family who come there are only 2 loved ones who attend.  We are hoping for more to join them. 

Some Loved Ones sit in with the Caregiver group, so it's completely up to them, but for Gary, I didn't want the comments/conversation to be troubling to him, and he benefits greatly from a simpler program geared to his understanding and abilities.  ​

​Rick McLean, our pastor of special ministries, directs our Caregiver meeting.  Recently, he has been teaching a series on Biblical JOY.  What it is, what it isn't, what steals it, and how to maintain it in the midst of suffering.  Today he talked about

Romans 15:13.  "Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit."

What a comfort that God intends for ALL Joy and Peace to be ours if we believe Him! 

Next, there is a time to meet any new people and hear their "story."  Most of these folks are rather new to the dementia experience and it's impact on a family, and so they can be discouraged, frightened, and sad.  Those of us who have been on the "road" for a while, have a chance to encourage them.  There can be quite a bit of dialog back and forth as we try to give practical and Spiritual encouragement to them.  Often there's phone numbers or emails exchanged for later. 

Original Painting for the Loved Ones group by Jini Keasling Illustrating Jeremiah 17:5-8 "For he will be like a tree firmly planted..." ​

Original Painting for the Loved Ones group by Jini Keasling Illustrating Jeremiah 17:5-8 "For he will be like a tree firmly planted..."

The rest of us give updates on our loved ones, and share prayer requests.  Again, we are given such good advice and courage to move ahead.  It comes from the wisdom of experience, and the truth of God's word brought to bear on any situation.  This morning someone shared how amazing that a nephew had moved to town and was helping her with her father.  This was unexpected and is really helping the family dynamic.  Another woman shared how her brother with Alz, is continuing to drive even without a license.  Many were able to counsel her with both practical ideas, and the encouragement to keep a gentle spirit as she tries to help.  I KNOW that God is listening to all of them as they pray for me and I am so happy to pray for them too.  The meeting is finished up with prayer for the group by Pastor Rick.  ​Occasionally we have had special events, such as a Hospice representative explaining Advanced Directives, or an artist, illustrating a Bible verse for our Loved Ones.  We also send out a monthly newsletter with great Alzheimer's resources and testimonies.

Gary is getting to the point where it's hard to decide if I should keep bringing him.  Once it becomes uncomfortable for him, or too much work for me, I will have a caregiver come to the house so I can keep going.  For now, I'm so glad that he was pretty alert this morning, had a good breakfast, was able to watch the movie, go for a walk, and hear music which is telling of the greatness of his Savior.  I'm so happy that I got to go too.  

These dear friends, whom I am bonded to, in our mutual difficulties, understand in a special way. 

2 Corinthians ​1:3-4 says, "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in ALL our affliction so that we will be able to comfort those who are in ANY affliction with the comfort with which we ourselves are comforted by God."
Special Worship music with the Loved Ones

Special Worship music with the Loved Ones

​God comforts me.  Through others.  Through His word.  Through providence.  That gives me the ability to comfort others.  Others in ANY affliction.  You don't HAVE to have the SAME trial to encourage someone.  We live in a fallen world that is careening out of control.  There is sin, sickness and death everywhere.  As hard as people try to escape discomfort, it's a reality.  How kind of God to encourage me.  Did you know that comfort means encourage (to give courage)?   We don't rant and rave about our situation.  We do cry sometimes as we share how hard things are, but in our little group, we are all about giving and receiving courage. 


Rummaging Around

Our garage only slightly messier than normal due to Gary's work truck being unloaded here prior to selling.

Our garage only slightly messier than normal due to Gary's work truck being unloaded here prior to selling.

Gary's always liked digging around in things, hoping for a treasure.  He loved a good garage sale, or antique store, the messier the better, because "discovery" is half the fun. Perhaps that is why our garage always looked messy to me.  He had some "gems" hidden there, and he usually knew right where they were, and if not, had fun finding them again. 

Bin 13 X 9 X 4

Bin 13 X 9 X 4

​At this stage of Alzheimer's, I have found that Gary still enjoys the process of discovery.  I happened upon this by accident.  Gary has to have some kind of gadget, tool, fabric, or toy in his hands at all times.  In fact when we need him to let go, and hold our hand, it is nearly impossible to pry his fingers off of the object.  These items end up all over the house, and I began keeping them in bins.  I noticed that he liked looking in the bins and picking up things out of the bin, so I began setting the tub on his lap.  He really likes digging through and grabbing on to an item or two and then manipulating them.  He'll lace the cord around his hand, or another object, twist the pvc pipe fittings, or fold and refold the fabric.  The other day, I handed him his "duck-bill" pliers (his favorite hand tool), and he used them to pick things out of the box.  I have to keep my eye on him so he won't pinch himself with them, but this is entertaining, and work for him.  He is working with his hands, not producing a product as in the past, but he is working.  His work is to use his hands and solve small problems, like picking up something that catches his eye and then see how it feels; smooth, rough, cold, or pliable. 

PVC fittings and 6" sections of pipe, are inexpensive, and loads of fun to take apart. 

PVC fittings and 6" sections of pipe, are inexpensive, and loads of fun to take apart. 

Here is an interesting article on rummaging, and how to adapt it for your loved one with dementia.  Click HERE to read it.  Women like digging around in a big purse for notepads, hankies, wallets, etc...Businessmen may like a briefcase filled with office type items, books, calendars, calculators, etc.  You get the idea.

At this point, Gary's bins have a mixture of tool-type items and toys as long as he shows an interest and it isn't dangerous.  We are all about "maximizing what remains" and rejoicing in the accomplishments, which are small in comparison to the past, but they are big for Gary right now.  I am so proud of him. 

Another one

Another one

The Latest Favorites

The Latest Favorites

"HELP! Someone I Love Has Alzheimer's" Book Review

Gary reads the Christmas story to the family way back when we were just beginning the long, difficult process of finding out the cause of his cognitive impairment. 

Gary reads the Christmas story to the family way back when we were just beginning the long, difficult process of finding out the cause of his cognitive impairment. 

Our journey began some time ago, but I, too, have cried for help way back at the beginning and many times since.  I have had moments of desperation, curiosity, and unstable footing.  For me, the panic comes when I'm facing changes in Gary, which require further adjustments, before I'm up-to-speed on our options, or confident in the best solution.  The curiosity comes when things are settled down, and I want to know what's likely to be out there in the future.  Of course I believe that God has the future planned, and I don't need to worry, but there is wisdom in being prepared. 

Click to Amazon

Click to Amazon

My friend, Becky, found this little booklet in our church's book store. HELP!  Someone I Love Has Alzheimer's is a good resource for someone who is new to the adventure of Alzheimer's Disease.  It is written by Deborah Howard, RN, CHPN, and Judy Howe, BA, MA.  Both of these women have parents with this type of dementia. 

From the introduction:  ​

Only within the perspective of God's will can we begin to make sense of it.  Our perception improves when we view this disease through a spiritual lens.   No, dementia sufferers can't rise above dementia by the power of their wills.  No, there is nothing the family can do to "make it all go away."  But yes, we can find peace, joy, abiding love, and even humor along the journey."

In a personal account of her own family's story, Ms. Howard explains the physiological changes to expect in your loved one, including the warning signs, how it's diagnosed, the stages, and the treatments.  These subjects are handled briefly but with enough detail to gain a good basic understanding.    The next section is devoted to practical suggestions for caregivers.  Humility, patience and humor are the necessary qualities for good care giving.  Legal issues, handling medications, Dr. visits, nutrition, activities of daily living, exercise and the environment are discussed with some very helpful ideas.  For instance:

To maximize communication, reduce background noise when speaking to your loved one.​
Assist your loved one, if necessary, in organizing policies, accounts and assets.  Make sure that two people know where these records are stored.​
​You need to maintain a complete list of your loved one's medications, including over-the-counter drugs and supplements.  (For each medication you should note the following: Medication name, Dosage, Time to be given, Who prescribed it and why)

​The care giver has needs and these are addressed as well.  We must take care of ourselves, both physically and spiritually, or we'll have nothing left to give our loved ones. 

People generally want to help but don't know how.  Teach them by making specific requests.​
"Seek first the kingdom of God, and his righteousness, and all these things will be added to you."  Matthew 6:22

​The final section (my favorite) is about trusting God in the midst of adversity.  "How can we reconcile the goodness of God with our pain and suffering?"   Basic truths about God's character and the purpose of adversity are the reason we can be thankful in the midst.  This booklet closes with several pages on the importance of having a saving relationship with Jesus Christ, which is the ultimate solution to the confusion, fears, and sorrows of very real pain and suffering.  

The cross of Christ is the ultimate solution to the problem of suffering and pain.  On that cross, Jesus not only conquered sin and death, but he also entered into human suffering and can, therefore sympathize with us in it.  God, in his infinite grace, did not leave Christ on the cross, but raised him from the dead to reign with him forever.  Christ's life, death, and resurrection secured the eternal salvation of all who will trust in him. 
3 months after Gary's diagnosis

3 months after Gary's diagnosis

​For less than $5.00, this 63 page booklet is a great way to introduce someone to Alzheimer's Disease from a Christian perspective.  I would love to have had this in my hands 6 years ago, when Gary was formally diagnosed with A.D., but it wasn't written yet.  I can already think of several friends I want to share it with right now.  I hope you find it useful as well. 

For more book reviews, click HERE.​