Friday, August 22, 2014

The Present

This morning I read a selection from Biblegateway's series entitled C.S. Lewis Daily.  In his novel, The Screwtape Letters, Lewis reveals truth regarding eternity and time through a senior devil's counsel to a subordinate.  Screwtape says it is important to tempt human beings to think much upon the future in order to distract us from the present moment, because the present is the closest thing we have to eternity.  It is in the present that the Lord provides us sustenance and strength; it is with God's present help that we are able to experience freedom from regret over the past or fear of the future. You can read Lewis's words HERE.

Later in the day I thought about my mother's delight in being served a chocolate sundae.  "I haven't had a sundae in a long time, this is wonderful!" she exclaimed. In truth, I had given her an identical confection the night before.  Mama (like me) does not tire of ice cream, but unlike me her joy over the treat was undiminished by the memory of already having experienced it just a few hours previously. 

There is something very sweet about a dementia patient's ability to function well even though robbed of the past and unconcerned about the future.  My mom lives in the present, and according to C.S. Lewis, the present is the nearest thing we have to eternity while we are in our human forms.  God is with my mom in her present moment and she is, for the most part, happy living there.

Especially when there is ice cream! 

Friday, August 15, 2014

Caregivers Can't Be Perfect

Today I was short-tempered with Mom.

I have excuses.  She isn't nice to me sometimes.  She feels rebellious in much the same way a teenager resents a parent who is strict.  For example, Mom doesn't remember why I insist she gets dressed by lunchtime. She feels she should be left alone and treated like an adult, and if she wants to have a "pajama day," she should be allowed to do so. Trouble is she would like every day to be a pajama day, and when she doesn't dress she doesn't bathe.  That daily sponge bath is a necessity.

So I insist.  And she resents.  And after awhile she forgets why she resents me but she still feels the negative emotion, and unfortunately she does not forget I am the one to blame for it.

Today she wasn't mean, and she didn't make little deprecating remarks to me as she sometimes does, but one of her comments triggered my irritation. On the surface it doesn't sound like it should have upset me, but I was having a bad day from stresses unrelated to Mom, and when she said reproachfully, "It's too bad you can't spend some time with me," I felt angry. 

I said, "Spend some time with you? Spend some TIME with you? All I do is spend time with you and on your behalf!"  I then listed all I'd done for her so far that morning (including a time of focused conversation). 

She listened calmly and with no sign of remorse or empathy. When I finished she fixed me with a stern, maternal gaze and said, "I have a question. What do you do for entertainment when you aren't yelling at me?"

It's ok if you are giggling a bit now as you read this. I'm smiling--albeit ruefully--myself.

As a caregiver I expect more of myself.  I expect I should be always loving and patient. I should never lose my temper, or speak harshly to my mother (even though she is not at all helpless in such situations, as the exchange above shows).  This attitude that because I am the caregiver I ought to be perfect reminds me of some lines from the movie You've Got Mail. 
Meg Ryan's character apologizes: "I was upset and I was horrible."

Tom Hanks' character takes the blame: "I was horrible."

Meg replies: "True. But I have no excuse."

Tom says: "Whereas I am a horrible person and have no choice but to be horrible, is that what you're saying?"  
A little of that sort of arrogance is at work when I expect perfection of myself while granting my mom full indemnity because she has Alzheimer's. Truth of the matter is, neither of us is sin-free. Mom was not perfect prior to her Alzheimer's, and her disease is not to blame for every instance of bad behavior since her diagnosis (although I do my very best to empathize and allow her plenty of leeway because she suffers from dementia). 

And, anyone who's read my devotional for caregivers is already aware I am far from perfect myself (the Lord led me to be transparent regarding my shortcomings in order to offer comfort to other caregivers who share the same sort of struggles).

God is gracious to both Mom and me.  Both of us require His grace and forgiveness, Mom no less now that she is fighting a battle with a disease that has robbed her memory, and I more now than ever before.

We all stumble along the way. If a person never speaks hurtful words...then he has achieved perfection--James 3:2 The Voice (VOICE) 

Tuesday, August 12, 2014

A Little Bit of Respite...

If you are a caregiver in need of a little bit of respite this evening, head over to my lighter-hearted blogFarmer John's antics will make you smile, and this morning the Lord gave me an object lesson in seeing beauty even when things aren't perfect.  Hope you enjoy: At Home in Karola, Kansas. 

Monday, August 11, 2014

It Always Comes Back to Abiding...

This morning I've been complaining to the Lord about my Alzheimer's mom.  Her version of being combative does not include throwing punches, but she is adept at utilizing words as weapons. When she is in a certain mood, there is no way to speak or interact with her that can defuse her anger.  In these moods she twists my every comment into something negative, cuing from her own anger rather than from anything in her environment.  Mom often expresses contentment with her circumstances and great love for me, but during these dark times she seems infuriated. Because her anger is not in response to anything I can predict or chart, this keeps me off-balance emotionally.  

As I complained to the Lord I was in full cry, nursing hurt feelings and recording Mom's hurtful actions and words, when I felt led to thumb through the contents page of the caregiving devotional I wrote during the time I was transitioning into the role of caregiver for Mom.  The chapter heading "Abide in the Lord" caught my eye. 

I was a little bit sulky about this; I was busy painting a picture of myself as a victim and didn't want instruction.  But I did want to feel better so I read further:
Abiding isn't doing, it is being. Abiding isn't abstaining, it is indulging. I am to indulge myself in Christ...Sometimes I fall to the deception that if I avoid the acquisition of spiritual discipline, then I will somehow be protected against experiencing the “hard things” in life. The opposite is true, although the enemy of my soul would attempt to convince me differently. Battles will find me whether I am prepared or not. To come deeper into the Lord and to nurture my relationship with Him strengthens me to survive and to be victorious, even when I traverse “the thickets by the Jordan,"--Jeremiah 12:5 (p. 110-112 My Mom Has Alzheimer's: Inspiration and Help for Caregivers). 
We are entering those "thickets by the Jordan" as Mom's Alzheimer's progresses. Now more than ever, abiding in the Lord is the discipline that will protect my heart from the venom of her disease-based behaviors. When I stay focused on God, He provides strength to respond in love even when a heart blow finds its target.  Describing the hurt in detail is not fruitful.  There is no distraction potent enough, no alternate source of comfort deep enough, no other place that provides the lasting comfort available to us when we open our minds and hearts to the Lord. 
Releasing my grief to Him and seeing His passion, His suffering, and His willing desire to take my pain upon himself has bound me in love to Him. I worship Him. I fall at His feet (p. 114, ibid).

"Surely He took up our infirmities and carried our sorrows ... the punishment that brought us peace was upon Him, and by His wounds we are healed” (Isaiah 53:4a, 5b).

“I am the vine, you are the branches; he who abides in me and I in him, he bears much fruit, for apart from me you can do nothing” (John 15:5, New American Standard Bible).

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort” (2 Corinthians 1:3).

Wednesday, August 6, 2014

Create a Positive Environment

I remember a Sunday School lesson I taught to a group of junior high students a few years ago.  I called it "GIGO": garbage in, garbage out.  The term came from the computing world; if the programming is bad, then the output will be flawed as well.  The analogy drawn for my group was this: we can't be careless about the material we choose to see and hear and nevertheless expect to behave with respect and kindness toward other people. Just as we should not subsist on a diet of junk food  with no healthy food choices, we also have a responsibility to guard what we view and hear in order to protect our hearts and minds. 

I was slow to extend this principle to my caregiving practices for my mother.  I knew I needed to provide reading material for her, but it did not at first occur to me to monitor what she read based on what I know about her ability to comprehend.  For my mother and, I assume, for most folks in the mid-stages of Alzheimer's, the ability to comprehend multiple layers of meaning is compromised. She is very straight-forward and the surface message is all she receives.

Musical selections are important as well.  Music bypasses the mind and travels straight to the emotions, and this affords a wonderful opportunity to create a positive mood for dementia patients.  I make sure Mom's music selections are upbeat.  Some of the music she once enjoyed has romantic overtones that now cause her to feel melancholy, for example.  Perhaps it reminds her of what she has lost or causes her to miss my dad or long for youth; whatever the reason I've noticed she seems sad after hearing certain melodies.  Christian Gospel and patriotic music put her in a wonderful mood.  Classical piano or guitar is soothing for her.  

I've know all this but recently I nevertheless made a caregiving error (aka, dumb mistake) that I allowed to persist over weeks of time.  I'd been to an author's event and had visited with a lady who had written an inviting-looking book that sported a cute title and attractive cover illustration.  I purchased a copy and when I returned home, thumbed through the pages and noted the reading level was in line with Mom's ability. Without actually reading the book myself, I gave it to Mom.  Over several weeks of time she read this book repeatedly, as she does, and during that same time frame her attitude deteriorated.  She was angry and often used curse words that before this time had appeared in her conversation infrequently.  I thought she was moving to a more advanced stage of Alzheimer's.

However, while straightening her chairside table I picked up that attractive book I'd purchased at the author's event and began to read.  I was not exactly shocked; disappointed was more my response.  What had seemed like a wholesome book of the "Little House on the Prairie" genre was full of unnecessarily crude descriptions and language.  I happened to flip open to a phrase Mom had begun to use often, "I sure as (expletive deleted) am not going to do that..."

I removed that book from Mom's table and placed the devotional I wrote for her into her hands.  Within two days time her attitude had improved and her outlook was sunny once again.

My mother has lost the ability to remember that a given reading selection may cause her to feel depressed, and she no longer knows how to change CD's in her player or even how to press the "off" button.  It is my responsibility as Mom's caregiver to monitor her responses and provide music, reading, and TV/movie selections that she responds to in a positive way. 

Monday, July 28, 2014

To Caffeinate or Not to Caffeinate--That is the Question!

For no particular reason, I decided to skip my daily cup of coffee this morning.  At about 10:00 a.m. a headache began behind my eyes and then quickly radiated to the top of my head.  It felt like a migraine, and I did not at first connect my lack of energy and head pain with the absence of the stimulate contained in just 8 ounces of Folgers Simply Smooth; my brand of choice. 

When the thought occurred that absence of caffeine might be to blame for the headache that threatened to send me back to bed, my first response was, "Surely not."  But a little internet research revealed that when our bodies acclimate to the caffeine in just one cup of coffee, skipping that daily dose can result in a thunder-boomer headache and lethargy. 

I would swear off my morning brew but for the studies I've read that say coffee drinkers who have mild cognitive impairment are less likely to progress into full blown Alzheimer's than their java imbibing counterparts.  I actually read a report of one of these studies on the very day I had decided to remove caffeine from my mother's diet.  She drinks coffee every morning and sips diet cola throughout the day, and I had decided too much caffeine might cause more harm than good. But once I'd read about the potential benefits of caffeine for Mom, I took a careful step away from the decaffeinated diet cola display at my local grocery store.  We need all the help we can get. 

I would never give an elderly patient caffeine in pill form; one has only to read recent news reports of the deaths associated with powdered caffeine supplements to know this would be a very bad idea.  And, caffeine may carry other health risks that you should talk over with your doctor.  But if your dependent loved one is a long time coffee drinker (and with your physician's approval) I wouldn't deprive them of the small amount of caffeine in a daily cup of joe.  The benefits may well outweigh the risks. 

Here is Web MD's article about the potential benefits of coffee:  Web MD Coffee Benefits

Again--talk to your doctor before changing health habits either for yourself or for your loved one. 

Now, if you'll excuse me, I'm going to make a pot of coffee! 

Wednesday, July 9, 2014

Bible Verses, Hymns, and Devotions for Alzheimer Patients

Ten years ago I began providing care to my mom, who was diagnosed with Alzheimer's disease in the spring of 2004.  During that time I recorded heartfelt prayers along with the Lord's answering solace here at this blog.  The blog was seen by an editor who asked me to write a book for her company.  The publisher named that book My Mom Has Alzheimer's: Inspiration and Help for Caregivers. I did not like this title at first, but then I realized: my mom does have Alzheimer's and the book does contain inspiration and help for caregivers!  

Almost as soon as that book was published in September of 2009, I felt the Lord's strong push to write a book of devotions for my mother and others who struggle with dementia. It is too easy to forget the spiritual needs of those precious care recipients whose physical needs overwhelm us while our own hearts are aching with grief of loss and burden of care.  And so I began rewriting devotions from My Mom Has Alzheimer's, this time from the patient's perspective. This was a valuable exercise for me as a caregiver, because it forced me to put myself in Mom's place as I attempted to view the world through her eyes.  

It is with a profound sense of having completed a task the Lord wanted done that I announce the publication of Beautiful in Each Season: Devotions for YouThe book is available as of today in both softcover (large print for patients who are still able to read independently) and as an eBook for the Kindle format.  I was able to hand the proof copy of the book to Mom today, and I just can't describe the blessing and relief I felt as she opened it and began to read aloud.  I am so grateful I accomplished this task while Mom is still able to benefit, and it is my prayer that others are blessed as well.  

The first few devotions in the book are available for preview at Amazon using the "Look Inside This Book" feature. Please pray with me that this book reaches those who can be helped by it!  I've included the back cover copy below: 

“People with Alzheimer’s aren’t dumb, they just have trouble remembering!”
Anna Ruth Williamson, Alzheimer patient since 2004.

The devotions in Beautiful in Each Season were written with respect for the intellect and spirits of those with dementia. The readings are straightforward but not childish in content, and are appropriate for independent or caregiver supported use. Because music transcends language and speaks directly to the heart, a few lines from familiar hymns are included with each devotion. 
Many of the conflicts that arise between people with dementia and their caregivers occur because two completely different perspectives must come together in order for harmony to exist. When the patient is a loved one, the caregiver faces not only an increased workload, but also new financial worries and the loss of emotional support as the relationship of the past is redefined. On the patient’s part, dementia has narrowed perceptions to the degree that there is little awareness or empathy for the struggles of the caregiver. The confusion and disorientation of cognitive dysfunction may result in suspicion and fear-based anger. When both patient and caregiver know and love the Lord, reminders of His steadfast love provide a common ground through which empathy and love can flow.
This book can be used either alone or in tandem with the caregivers’ devotional, My Mom Has Alzheimer’s: Inspiration and Help for Caregivers (Bridge-Logos Foundation, 2009).  

“As caregivers we must not allow our loved ones to forget God’s love”
Linda Born