Wednesday, May 29, 2013

A Little Bit of Hope

I’ve been reading about a phenomenon called “pleasant dementia.”  This seemingly contradictory term first came to my attention in a recent edition of the Mayo Clinic’s caregiving newsletter, and when I did an Internet search I found hundreds of articles about individuals who exhibit peace and happiness as Alzheimer patients.  Many articles told of people whose personalities actually improved following a diagnosis of dementia. 

This doesn’t always happen because at least a portion of the symptoms dementia patients experience are due to the specific part of the brain most affected by Alzheimer plaques and tangles.  However, many sources cited environmental influences as playing a part, and this offers hope. 

The “pleasant” portion of dementia is not always evident immediately following the diagnosis as the care recipient loses independence, the caregiver struggles with new responsibilities, and both suffer grief and fear.  My first year as my mother’s caregiver was certainly a challenge.  She was confused, I was angry, and we both were resentful.  There were many physical challenges for her that year as we struggled to reach maintenance doses of Alzheimer medications.  She fell and broke her shoulder as a result of a caregiving error on my part (throw rugs are dangerous for the elderly).  I had to nurse her through numerous stomach upsets and a bout of pneumonia.  I really didn’t think we were going to make it. 

But almost a year to the date following Mom’s diagnosis, things got better.  We both came to acceptance of the changes in our lives necessitated by her disease, and Mom settled into a level of contentment that was unprecedented.  It doesn’t take much to make Mom happy nowadays: soft music, a diet coke, a book to read, and her journal at hand. Her needs are simple.  She’s not like she was but I love who she is. 

Mom doesn’t worry about either the past or the future, and I know her faith has contributed to the ease with which she let go of worry for her own life.  Soon after she came to live with us I found these words recorded in her journal:  This is one of those times when I hardly know who I am, where I am, or why! Well, God knows and when He is ready He will fill me in.” Mom is philosophical about her lack of short-term memory and has a sunny assurance that her needs will be met. 

The knowledge that a diagnosis of dementia is not an automatic sentence to misery goes a long way toward easing fear of the future.  This is a comfort for those of us who dread the possibility of an Alzheimer diagnosis for ourselves or for someone we love.    

Friday, May 24, 2013

Video Series

I've begun a Youtube video series in order to share information from my caregiving book.  These presentations are geared especially toward those who are struggling to make a transition from past relationship roles into news ways of relating to a loved one who has become infirm, but I think they will be helpful at any stage of a caregiving journey.  Since my mother's Alzheimer diagnosis nine years ago, I've learned that our relationship must be renegotiated each time she takes a downward turn. During those times the devotions and Scripture from my book become helpful once again.

The first two weeks' installments are available here: 

Week One--Hold to Hope

Week Two--First Steps (steps to take as a new caregiver)

 Today I read a Facebook post that resonated with me:  "Knowing that you are making a difference in the life of even one person makes everything you've gone through seem worthwhile,"   Please share the links above with caregivers who may be helped by the guidance God so has so graciously provided Mom and me as we navigate our way through her Alzheimer's disease. 

Monday, May 13, 2013

A Christian Perspective on Aging and Death

My mom as a bride at age 22 and still beautiful 66 years later. 

Taking care of my mother has forced me to face that I myself am poised at the threshold of my own elder years.  When I become bound by fear of someday becoming like Mom, I feel impatient with her weaknesses and inclined to blame her for behaviors she can't help.  My attitude becomes, "Snap out of it!  You can do better if you try!"  Fears of aging and dying are major stumbling blocks that compromise the ability to provide compassionate care to an elderly parent.  

As Christians, we are to view death as a passageway to new life.  In my mother's words:  
"It is sad that we humans so often view death with dread--the actuality is that it is a blessed doorway into God's continual presence"  (Anna Ruth, 2007, quoted from My Mom Has Azheimer's: Inspiration and Help for Caregivers).  
Saint Paul says it is "better by far" to depart this life and to be at home with Christ in the next (Philippians 1:22-24), but it is a challenge to abide in Scriptural truth regarding this issue.  If we were allowed to choose a point to inhabit on our own timelines, wouldn't we all choose youth?  When we look at the photos above, who would not prefer to be the lady in the photo on the left rather than the one on the right?  And yet...I happen to know the 88 year old pictured above now lives a life of nearly carefree contentment and ease, while the 22 year old bride had many struggles before her. I think maybe the Lord views a peaceful old age as a reward for a life well lived. 

My difficulties coping with the prospect of aging and dying caused me to devote ten readings in my caregiving book to these topics.  I'll close this post with a quote from one of those readings which includes the Lord's answer to heartfelt prayers as I cried out my fears to Him. 

God does not willingly bring grief or suffering (See Lamentations 3:33;) His will flows over all that is grievous and changes darkness to light (See Psalm 18:28;) all things are incorporated into and transformed by His perfect will (See Romans 8:28;) where time and eternity touch, His will is done on earth as in Heaven (See Matthew 6:10;) we can’t yet perceive what we will one day see clearly because we walk by faith and not by sight. (See 1 Corinthians 13:12).
The sovereign over death. His good and perfect will encompasses every life event, even those that cause us pain. He is able to work every circumstance into conformity with His will, for our good
The Lord is so gracious to us; He doesn't leave us alone.  I'm praising God today for His presence with us throughout every season of life. 

This post includes quotes from My Mom Has Alzheimer's: Inspiration and Help for Caregivers, Bridge-Logos Foundation, 2009. 

Thursday, May 2, 2013

A New Song!

I've been on a fast from music.  Now that sounds a little bit odd, but I think maybe I've discovered why I've been neglecting this part of my life that used to mean so much to me.

Everyone encounters grief and pain.  My sorrows, if I were to compare them to those of others, wouldn't look unusual or particularly awful.  But the Lord doesn't compare hurts, and he knows our hearts. He's shown me great compassion. 

At each life crisis I worked hard to praise God through the sorrow and pain. Thus, certain praise and worship melodies became associated in my mind with the grief of heart I was bearing when I used those songs in my devotion time.  Without even realizing it or deciding to do so, I gradually stopped singing praises to the Lord.  

I've felt guilty about this situation and this morning decided to remedy it.  I wanted to begin my devotion time with praise but to my dismay, every song I began to listen to brought with it the memory of some painful time.  Three false starts and I gave up.  I was in no mood to suffer again through battles that are now in my past, and music is so evocative; it bypasses the brain and communicates directly with the heart.  So I completed my prayer time as has become usual--speaking a few words of praise and then moving quickly to prayer concerns.

Not a lot of fun for me or for the Lord either, I don't imagine.

Later this morning I was washing dishes when this phrase dropped into my mind:  "Sing to the Lord a NEW song."  Just like that, with the emphasis on NEW, and I understood that I needed to take this admonition literally.  I did a google search for "The top  NEW praise and worship songs" and downloaded the top five.  Amazing!  I had the best, most restorative, sweetest time praising the Lord with these new songs!

With the wonderful flow of new Christian music that is so easily available there is no excuse for me to let music fade from my life again.  I read an article recently emphasizing the importance of music to Alzheimer patients; but in this post I'm encouraging caregivers to include music in their own lives as well.  Sing to the Lord a new song!

To listen to the song that was #1 on the list, click on this Youtube link:   The Same Love by Paul Baloche

And here is the song by Paul Baloche that is so blessed for us as caregivers, thanks to Mary over at "Down the Rabbit Hole" for finding this one:   My Hope by Paul Baloche and Kathryn Scott

"He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in him" (Psalm 40:3). 

Wednesday, May 1, 2013

Prayer for a Cure for Alzheimer's

Each of these lapel pins represents a memory I pray I can keep.    
My mom has Alzheimer's.  Near the end of his life my dad exhibited signs of dementia.  His sister died of Alzheimer's.  Both my maternal grandparents had "hardening of the arteries" and "senile dementia," terms used to describe the forgetfulness experienced by the elderly before Alzheimer's disease was widely recognized.

Of course I worry about forgetting. 

I was cleaning out a drawer this afternoon and unearthed a little plastic container filled to the brim with brightly enameled lapel pins, about 20 in all.  I poured them into my hand and memories began to flow.  The Kansas shaped Reading Recovery pin evoked the strongest emotion; I felt I made the most positive impact on children's lives during my years as a Reading Recovery teacher.  Running a close second was the golden circlet shaped like children holding hands. This brought back memories of years of playground duty.

I've taken to carrying a trash sack with me whenever I clean a room, in order to encourage myself to throw away things I don't need.  I held the pins in my hand a moment, but made no move to deposit them in the plastic garbage bag at my feet.  After a moment or two I put the pins back into their container and returned them to the drawer. 

If only I could hold onto my memories in this same way, tucking them safely away into a protected corner of my mind with certainty I can retrieve them whenever I want... 
Please join me right now in a prayer for a cure for Alzheimer's:  Dear Lord, we pray that Alzheimer's is defeated within the next few years, so this disease that has stolen so many memories becomes only a memory. Make it a defeated enemy with no more power to rob us of our independence and the ability to understand and reason.  Banish this disease in order to keep us from inflicting on our loved ones the agony of that long goodbye.  Free our children of the threat of this disease. We ask this in the name of our precious Lord and Savior, Jesus Christ, who will never forget us, even if we forget, who will never let go of us, even if we forget how to hold on.  Amen

Scripture:  "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!" (Isaiah 49:15).