Sunday, August 28, 2011

The Rhythm of Our Days

Mom had picked up one of the Anne of Green Gables books and had recorded the title and author here.  She'd also spilled her water on the notebook!  
Routine is important for Alzheimer patients.  I remember during the early days of my caregiving journey that it was difficult to establish those very routines that would later provide my mother security and a sense of peace.  We both had challenges to face as we learned to be caregiver and care recipient.  Mom's challenges came because she could not remember, but my difficulties were mostly because I lacked experience and was learning as I went.  

It is a common misconception that Alzheimer patients cannot learn new information.  In my experience with my mother's Alzheimer's disease, I've found she is able to learn, but she requires many repetitions and visual prompts to do so.  Keep in mind that my mother is still in the-mid stages of Alzheimer's--approximately early stage 5.

Here are some of the ways we have established routines that have made my mom's days run more smoothly:  

  • She receives her medication, meals, and snacks at about the same time each day.
  • I use a large white board placed in her direct line of vision to record the day's events.  This helps her to remember that she has had interactions with other people.  Otherwise, she begins to feel that she might be neglected.  
  • A clock and a calendar are very important for my mother's peace of mind.  And so these have been placed within her direct line of vision. 
  • Easy access to a notebook and pen is a must.  My mother already had established the habit of journaling, and so this was not a new behavior.  Dementia patients are greatly helped if they can form the habit of recording the day's events.  Mom was in early/mid stages of A.D. when she came to live with us, and was able to establish the habit of keeping a running record of the day's events as a memory aid. 
  • I've established a regular sequence of events for rituals such as dressing and bathing.  We follow this sequence every day.  Mom never remembers the sequence well enough to anticipate what she should do next, but she is able to remember that she can ask me.  Her initial resentment at having to take direction from me has dissipated over the years.  I'm her go-to information source now; I really think she has a similar relationship to me as I have with the Google search engine.  Anything Mom needs to know makes her think of me (sigh). 
When I first became Mom's caregiver, her resentment at needing my help was a real barrier to achieving positive interactions between us.  If the caregiver can remain calm and kind it's possible this initial resistance to accepting help will fade.  I've found that if I exude an attitude of calm confidence that what I'm asking Mom to do is best, that this often helps.  If I get irritated I may as well give up and come back later.  

 For me the rockiest days of caregiving thus far have been those early months of adjusting to one another in our new roles as caregiver and patient.  It took nearly a year for the adjustment to be complete.  During that first year Mom suffered a fall that broke her collar bone followed immediately by a bout of pneumonia.  Who would have thought that seven years later my caregiving duties for my mother would actually  be lighter than they were then?   There have been no more falls, and at 87 years of age, Mom is in good physical health.   I share this to in order to encourage new caregivers not to give up too easily.  Some dementia patients can experience improvement and adjust to a new living situation, given proper medication and time. 

Thursday, August 11, 2011

Weddings and Other Slippery Slopes

Mom and I posed for a photo a couple of hours before Jonathan and Nicole's wedding ceremony.  Jon is Mom's only grandson.    
  I borrowed the title of this post from my daughter, Melinda.  She once wrote a blog entry entitled, "Birthdays and Other Slippery Slopes," detailing the emotional roller coaster of  family celebrations.

I've  thought of Melinda's blog post title often these past few months as we navigated the "slippery slopes" of the joyful but stressful days just prior to the wedding of our son and beautiful daughter-in-law, Jonathan and Nicole.  I was so worried about Mom because, for reasons not fully understood, holidays and other special occasions are often a catalyst for a downward turn in functioning for dementia patients. Emotion, especially emotion that recalls other very sad or very happy times, does a number on the Alzheimer diseased brain. 

Mom was diagnosed with Alzheimer's just a month after Melinda and her husband, Brian, were married seven years ago.  During the busy days preceding that wedding, Mom's dementia symptoms became more pronounced.On the day of the wedding she needed my aunt's help in order to style her hair and to make it to the wedding on time.  Melinda and Brian were married in March, and Mom moved in with us in early November of that same year.  She was no longer able to stand the stress and confusion of living by herself.  I've always felt that the emotions surrounding Melinda's wedding somehow triggered Mom's transition from mild dementia into the early/mid-stages of Alzheimer's. 

And so I was vigilant to be protective of Mom as this latest celebration approached.  I shielded her as much as possible from the hoopla surrounding this exciting, beautiful, emotional event, and felt trepidation on the day of the wedding as Mom fielded three separate caregivers who arrived at designated times to serve her a meal, fix her hair, and help her dress.

She came through like a champ.

She was cheerful and good natured.  She joked.  She smiled.  She seemed to enjoy the proceedings.  We brought her to the church for the three hours preceding the wedding and she smiled for many photos and apparently loved interacting with the bride and groom as they greeted her and coaxed her to her feet for a series of formal photos. 

Go figure.

Mom and her grandson, Jonathan. 
Alzheimer's disease can't be charted or predicted with perfect accuracy, and the course of the disease varies greatly from one individual to the next.  The past seven years have brought Mom improvements in nutrition, weight, and medication.  These things, in combination with a comfortable, generally predictable environment where she feels secure, have evidently combined to afford Mom the capacity to cope with the slippery slope of a wedding celebration. 

I am afraid of her next downward turn.  I am so grateful that Jon and Nic's wedding did not trigger that much dreaded transition. 

Here are a few more photos of the wedding:
This one's titled, "Oh my gosh, I'm dancing!!!"  Blessedly, my son is a gifted dancer and all I had to do was follow.  I didn't expect quite so many twirls and turns, though. 
They are so beautiful.  We are so blessed.  God is so good.  *Sigh. 

Saturday, August 6, 2011

Prayer Trumps Intellect

Farmer John and me, dancing at our son's wedding.  My smile proves that happiness is possible even after doing something not very bright, such as locking oneself into a closet at a wedding reception. 

Years ago I watched a television interview with a famous movie actor. At one point in the segment, the host asked whether there was anything in day-to-day life that got under the actor's skin.  "What really bothers you?" the interviewer asked.

The actor answered tersely and succinctly, "Stupid.  I can't stand 'stupid.'  He leveled his piercing gaze upon the hapless reporter and paused a moment in order to heighten the dramatic impact of his words,  "Stupid really bothers me." 

And that was that.  The interview came to a close and I had the feeling that the actor's impression of the interviewer was probably very close to the sentiment he expressed in that one word, "Stupid." 

I've thought of this exchange often over the years, particularly whenever I do anything that is, well, stupid.

Like the time I drove really close to the railroad tracks in order to cautiously look both ways just as the bells began to ring and the arms descended.  I panicked, couldn't find the gear shift, and ended up with a three foot long scratch along the side of  our brand new Ford Escape from one of the guard arms.

Or the time, in an art class, that I thought "Versailles" was pronounced the way they do it in the Ozark Hills of Missouri, where there is a town of that name.  In Missouri they don't call it "Vair-sigh,"  but it is "Ver-sales", just like it looks.  I betrayed my hillbilly upbringing right there in front of a lot of very cultured art students. 

And then there was the moment just a couple of weeks ago when I managed to lock myself into a room sized closet during my son's wedding reception.  The noise of the crowd kept anyone from hearing as I tapped on the door.  I began to shout and finally kicked at the door repeatedly, until suddenly all 250 people in the reception hall fell silent, and with a sort of  unified crowd perception,  heard my cries for help.  My son-in-law unlocked the door and I emerged, red-faced, to the sound of laughter and applause. 

I could go on for quite some time with memories of times my lack of intellect or inability to think quickly landed me in an embarrassing situation.  I am certain that famous man I quoted at the beginning of this post would not be able to bear my presence for long.  Lots of times I'm just not very bright. 

But that's OK, because I have a hookup with the Creator of the Universe.  I almost feel sorry for people who, through their own grit, determination, intellect, and hard work, are able to gain success; only to see some not-quite-up-to-par sap like me experiencing peace and comfort I don't deserve, just because I prayed.  

 Most recently one of my near misses with disaster occurred when, after following the Lord's lead to give up my teaching job earlier this spring, I could not find a way to provide health insurance for my husband and myself . We are in our late fifties, and in a situation that would not have surprised someone who is better informed about the health care crisis in this country, I found that private carriers would not accept us, and business carriers would not recognize us as a legitimate small business since we are "just" farmers.  Furthermore, the premium quotes we had received were so astoundingly expensive that we could not afford them, even if they would accept us.  At three in the morning this past Wednesday, I fell to my knees and cried out to the Lord for help.  I received the clear impression that we already possessed both the funds and the solution to an insurance carrier that we needed.  I racked my brain and, being not bright as I've clearly established above, couldn't think where in our assets we possibly could find additional monthly income that would cover horrendously expensive insurance premiums.   

It is time to make this long story short, but here is the solution we found through a series of serendipitous discoveries that came, not by my savvy, but by God's grace.  I found that because I am over 55 and have more than ten years of service as a public employee,  that I can retire and begin to draw my pension.  I then found that as a retiree with more than ten years of service, by Kansas law both Farmer John and I can continue with the group insurance plan we've had for 22 years through the school where I worked.  

Godly wisdom is one thing, human intellect entirely another.  By God's grace I can participate in His wisdom and provision, even though I could fairly be categorized as "not quite bright" in the eyes of the world! 

Scripture:  "It was not by their sword that they won the land, nor did their arm bring them victory; it was your right hand, your arm, and the light of your face, for you loved them" (Psalm 44:3).