Wednesday, December 31, 2014

Nifty Christmas Gifts for my Alzheimer's Mom

My mom received some really lovely Christmas gifts this year that other dementia patients might appreciate, so I'll share them here.

Mom loves her dementia digital clock (right).  I was concerned that she might not be able to read the date, which is relatively small, but the contrast between the numerals and background is good and the clock is well lit, so she has no problem. The dementia day clock (left) eliminates a.m./p.m. confusion.  It may be coincidental but since Mom received her day clocks, she hasn't called me at 2 a.m. to ask what time it is! 

We of course did not use the term "dementia" to describe her new gifts for her.  I said, "These are for people who are retired and no longer have set schedules, to help them keep track of their days." 

A cozy cardigan and a soft lap robe. 

Mom has always loved cardinals--she calls them red birds.  Our daughter-in-law found incredibly soft flannel sporting Mom's favorite feathered friends, and tied a lap robe for her.  Mom loves it--she keeps exclaiming, "This is so soft!".  The lap robe has the added benefit of being especially warm, so I can lower the thermostat in her room to a level that keeps me from gasping for air as I go about caregiving chores. The red cardigan we gave her just happened to coordinate with her new lap robe so she looks as cheerful as she feels. 

Some Alzheimer patients might be offended by children's picture books, but not my mother.  She loves her "My First Little House" books, and reads them aloud as for an audience. 

Another favorite gift is the hymn songbook and c.d. gifted by our daughter and son-in-law.  The songs go a bit fast for her but Mom doesn't care.  She often has the book open to a different hymn than the one playing on the c.d., and sings her own tune quite happily.  I tried turning the c.d. off because the dissonance bothered me, but Mom objected.  "Why'd you turn off my music?  I'm singing with it!" she said. If she's happy I can put up with two unrelated joyful noises being raised together!

We are settling in for a cozy January here in Kansas thanks in part to these items that, for now, have raised Mom's contentment level. Happy New Year from our home to yours. 

Sunday, December 14, 2014


A few months ago my daughter and I volunteered to teach the first through third grade Sunday school class at our local church. I was ambivalent about this new job assignment because caregiving duties for my mom can only be expected to increase, but my grandson is in the class and no other teachers volunteered. And so we took up residence in a tiny room scarcely large enough to accommodate a half dozen pupils and two teachers.

Our classroom's single table became cramped as attendance increased, and a week ago we realized that if there were no absentees in any given week, we would have more students than chairs or table space.  We discussed finding another small table and finally agreed that I should bring a card table.  But I didn't do it.  My card table was just too big for the allotted space.

When I walked into our classroom this morning, there sat a new little table, the perfect height and size. "Did you arrange to have this table put here?" I asked my daughter.  But she had not mentioned the need to anyone, nor had I.  We learned later that refreshments had been served from that little table at a function earlier in the week. Someone had pushed it into our classroom to get it out of the hallway and then apparently had forgotten it. We remembered to thank the Lord for providing for us and I was aware this was an affirmation that despite my stressful caregiving schedule, teaching Sunday School is something the Lord wants me to do.

Awhile later, I rummaged through a cupboard looking for additional Bibles for our classroom. I found a worn children's Bible, flipped open the cover, and was startled to see an inscription in my own handwriting. I stared at the date--December, 1982--exactly 32 years ago.  In that moment as my 60-year-old self stared at an inscription I'd written as a 28-year-old Sunday school teacher, my past juxtaposed with my present, and I saw that God has woven a theme of ministry to children throughout the fabric of my life.  For just an instant it was as though I was freed of my usual myopic fixation on the present moment and was enabled to share the Lord's perspective. I was reminded that He sees the whole of my life from birth to final breath, and is sovereign over all. 

Taking care of someone who has Alzheimer's disease can wreak havoc with hope. It is easy to focus upon my own fear, and difficult to avoid projecting possible future outcomes based on my present, limited perspective.  Today a new table and an old Bible reminded me that God knows exactly where we are on our individual timelines.  He sees our lives from beginning to end, and is present with us at every juncture. Nothing takes him by surprise--and He has made provision for us every step of the way.  It is safe to place our eyes firmly on a God such as this. It is safe to hope in Him, even in the midst of a journey through Alzheimer's. 

Thursday, December 11, 2014

Like a Dorm Room (Only Quieter)

My mother is in the tenth year since her Alzheimer's diagnosis, has the beginnings of macular degeneration, and is 90 years old. It is amazing that she manages to navigate her little apartment as well as she does. But recently, despite the nightlights in her bedroom, she has seemed disoriented as she's maneuvered her way from the bathroom back to her bed during the night, even though it is only a dozen steps away.

Taking care of someone whose condition is deteriorating requires the ability to adapt to increasing levels of need. I admit that flexibility is not my long suit, but there is another factor at work that sometimes causes me to ignore signs of Mom's diminishing abilities; I don't want to admit she is failing. Despite all I know about Alzheimer's disease, I have an emotional reluctance to recognize signs of Mom's physical and cognitive decline. 

When Mom began to complain of having trouble finding her way, her room conditions were exactly the same as they've been for the past ten years. There were two nightlights in her bedroom along with three nightlights in the living area.  Nothing had changed but her ability to function in her environment, which I was slow to admit. Thus, I essentially allowed my poor mother to stumble around in the dark for a few weeks before I gave careful thought and prayer to how her environment might be adjusted, not only to ease her confusion but also to decrease her risk of a fall. 

I'm pleased with our solution to this problem. Earlier this week I ran a strand of white Christmas lights behind Mom's two dressers, gathered the extra length into a clear storage box (being careful not to bend or put pressure on the wires) and pushed the box underneath Mom's bed. The result is a soft glow that outlines the shape of her bed clearly, but when she is in bed the light is behind her and she is not bothered at all.  In fact, she's been calmer and has seemed to feel more secure; last night she said, "It is so cozy in here."  And indeed, her softly lit quarters now boast a sort of dorm room ambiance.

Most of us struggle with a period of denial when loved ones lose the ability to function as they once did. Throughout the course of a an illness, the caregiver/patient relationship has to be renegotiated as the care recipient's needs increase. As we stand on the threshold of the final stretch of Mom's Alzheimer journey, I pray for wisdom to understand and grace to respond quickly to her increasing needs.

Sunday, December 7, 2014

God Has a Plan

I've blogged for a long time, about ten years now. Once in awhile--not often--I've been surprised by sweetness of friendship with someone I've met only through blogging and subsequent emails.  This happened for me recently when a series of coincidences between my life and that of a precious new blogger friend occurred, connections that seemed to shout "Here is a heart friend for you; one connected by His very hand for comradeship on your earth-walk and as a fellow child of God throughout eternity!"

News came this week via this dear new friend of an incomprehensible sorrow.  I'm not going to repeat the details here because the story is not mine to share, but even if you (like me) avoid reading newspapers you have not been able to avoid reports of similar grievous events that just make no sense to us.

I'm not going to spend time postulating reasons that bad things happen, I only want to share the phrase that came strongly to me as I began to pray for the family impacted by this sorrow: God has a plan.

How can I convey in mere words the overwhelming sense of comfort and rightness that came with this knowing: our Lord saw this event ahead of time and has planned for it since the beginning of the world. He has a plan for each precious life impacted by this sorrow. Things aren't going to be merely "all right;" they will be surrounded by His presence, shaped by His love, and in the end actually blessed not only despite this terrible grief but even through it.

No, I don't mean to tell someone who has lost a loved one that everything will work out and they'll even be blessed by this loss. This is so trite as to be untrue; our lives are incredibly precious and the Lord Himself wept when his friend, Lazarus, died. But we serve a God who possesses resurrection power, and He does not hesitate to use this power on behalf of His grieving children.  He disarms the enemy, provides healing balm for broken hearts, and is able to transform the saddest of circumstances into vehicles for His love to flow.

At the moment of a devastating diagnosis, a tragic event, or any other heartache that can come to us, God is present with us, and He has a plan.  We may not be able to see it when we are blinded by grief, but we can trust in the love of our God and know that He is going to see us through according to the beauty of His perfect power over every circumstance of our lives.  I've seen this in my mother's life; even a ten year trek through Alzheimer's disease is no match for our Lord. I have seen blessing upon blessing come to our lives not only despite Mom's Alzheimer's, but through it.  How like our hero, the Lord Jesus Christ, to use the enemy's ploys as stepping stones to victory!

We can trust our Lord's perfect love and His sovereignty over every circumstance of our lives. I'm praying the peace of this knowledge for people who are hurting today.  May our Lord meet your every need and provide you the comfort of His strengthening and healing love. 

Friday, November 28, 2014

In His Time

In the months before she was diagnosed with Alzheimer's ten years ago, my mother was in crisis.  I spent hours in prayer for her and helped her every way I knew how.

Mom's disease had already progressed further than we knew at the time. The devotions I wrote for her and the prayers I prayed seemed to bear no fruit; the opposite seemed true because Mom resented my interference in her life. This sort of response is not uncommon for new Alzheimer patients; it is hard to accept the need for change, and the confusion of early dementia exacerbates fear and shades perceptions.

Mom suffered a terrible fall the first winter after we brought her to live with us.  She broke her collarbone and then, sent home from the hospital to recover, suffered a cold that turned to bronchial pneumonia. I thought we were going to lose her, but instead the Lord brought healing.

For several years resentment toward me simmered throughout most of Mom's responses to my overtures.  She hated having to bathe, take a walk, or go to bed just because I said it was time to do so, and her Alzheimer's made her forget that she had lost motivation to do these things on her own.

This past year I put the devotions I'd written for Mom into book form, and matched the readings with the hymns she loves. Though my name is on the cover of the book, Mom's Alzheimer's has now progressed to the point that she doesn't realize that her daughter wrote this devotional.  Last night I was in her apartment emptying trash cans and removing dirty dishes when she said, "Just listen to this wonderful devotion..." and she proceeded to read aloud words I'd penned, encouragement the Lord had provided just for her.  She closed with the Scripture reading at the bottom of the page and looked at me. "Isn't God good?" she demanded, as though daring me to state otherwise.

Not waiting for an answer she looked back at her devotional.  "Now I will sing the hymn that goes with this reading," she said.  Tears ran down my face as I listened to my mother warble Just as I Am, and my heart warmed with the Holy Spirit's presence.

During the early years of Mom's Alzheimer's, my heart ached from her rejection of the Lord in me.  She thwarted my attempts to help and said things that hurt my heart. I forgave her but I didn't think she would ever accept the blessing God had offered her through the anointing He gave me on her behalf. I couldn't see the use of having spent so much time in fervent prayer for my mom when those prayers seemed to have no impact on the course of her disease or her heart toward me.

But tonight it was as though God whispered to my heart, "You see? I heard your every prayer."

So often, the Lord asks us to trust in Him when we can't see where our paths will lead. When a loved one is diagnosed with Alzheimer's there is so much fear and uncertainty, but I am here to tell you that it is safe to place your trust in our God. At the time of Mom's diagnosis I never would have dreamed that the love and prayers I offered on her behalf then would bear fruit for her ten years in the future; I didn't think Mom would survive that long, much less still be able to think clearly enough to sing and to pray.

But God knew.  He always knows.  Blessed be His Name! 

For the remainder of the month of November and throughout December, my mother's devotional, Beautiful In Each Season, has been reduced to the lowest prices allowed by Kindle and Createspace, both eBook and hard copy formats.  This is a wonderful time to supply copies of a large print devotional to shut-ins, nursing home residents, and care recipients.

Wednesday, November 19, 2014

Pray in All Things

I suppose all mothers have pet bits of advice that, over time, become ingrained in family lore. "Wash behind your ears...put on clean underwear (in case you have an accident, the EMT's won't be appalled by you)...don't fidget in church..."  A small portion of my counsel to my children has been stellar, the greater part nonessential, and some downright ridiculous.

However, I stand by one of my oft-repeated instructions, first utilized in that moment of terrified desperation every parent feels when their teenager slips behind the wheel of a vehicle for a first solo excursion. When this transition came for my 16-year-old daughter I shouted one last word of advice after her rapidly retreating form: "PRAY IN ALL THINGS!"

This has become the customary parting phrase for me each time my adult children walk out the door; "I love you, call me when you are home safe, pray in all things!"

I have realized that although my "shouted advice" version of this counsel may be unique, the familial example of praying in everything did not originate with me. This was brought home to me recently when I delivered my mother's supper plate.  Mom loves macaroni and cheese. Her plate featured a generous portion of this favorite dish, and there was also a half sandwich and a cup of applesauce.  Mom began eating the mac and cheese with relish, inserting little comments of appreciation between bites. "This is so creamy...I love this." After a few moments the timbre of her voice changed and I heard her pray, "Guidance, please Lord, for when to stop eating the macaroni and to pick up the sandwich."

My Alzheimer's mom truly does pray in all things. When faced with anything unpleasant she closes her eyes and prays aloud, "As you will, Lord, as you will." And with increasing frequency as her Alzheimer's progresses, I hear this repetitive prayer, "Guidance please Lord, guidance." 

A friend recently asked me how Mom was doing, and I replied, "You know for how little she has left cognitively, she continues to do amazingly well."  Understand that Mom often thinks I'm her granddaughter, sometimes believes she is in a facility rather than in our home, and recently mistook gas pains for labor pains (she told me it would be time to have the baby soon). Her Alzheimer's diagnosis was ten years ago and she is 90-years-old, but she somehow manages to function pretty well within the familiar environment of her little apartment. 

When I heard Mom pray about how she ought to proceed in eating her dinner, I realized why she is able to continue to manage as well as she does despite the confusion of Alzheimer's; the Lord has not departed from her. The Holy Spirit is described in Scripture as counselor and teacher, and He has not abandoned my mother.

When Mom inquires of the Lord, He does indeed provide her with help.  Following her prayer for guidance during the incident described above, she paused in her compulsive intake of the mac and cheese and appeared to be listening. She then picked up the sandwich with her other hand and began alternating bites of sandwich with forkfuls of the irresistible main dish. 

With my family's history of dementia, I find this evidence of God's continued presence in Mom's life wonderfully encouraging. Once again I've been reminded that the best preparation for a possible diagnosis of Alzheimer's disease in the future is to cultivate a relationship with the Living God in our present. Once we've made the decision to believe in what Christ did for us on the Cross and have asked to be adopted as a child of God, we belong to Him. The confusion of Alzheimer's doesn't cause God to depart from us.

...God has said, “Never will I leave you; never will I forsake you.”
--Hebrews 13:5

If you feel your relationship with the Lord isn't one that will afford you the peace and guidance my mom enjoys, check out this link. 

Thursday, November 6, 2014

A Practical Post

I recently received an email from a dear lady who deals with her Alzheimer mom's incontinence. "Do you have to deal with incontinence issues with your mom?" she asked.

Well, yes I do.

My primary ways of offering comfort to fellow caregivers are in the emotional and spiritual realms; this is my assignment from the Lord. "Nuts and bolts" advice is not so difficult to find, but the provision of heart-solace to caregivers is an oft-neglected area of ministry.  However, it occurs to me that those who read this blog regularly might appreciate knowing how we manage the day-to-day caregiving issues that so many have to face. This is not meant to be advice for anyone else; please clear all caregiving procedures with a health care professional who knows your loved one well. 

Bathing--Back in 2007 (where does time go?) I wrote a post entitled Bath Day that you can find here. About the only change we've made in the ensuing years is that I now have Mom wear her Crocs right into the shower and don't remove them until she is seated. After she has bathed she puts them back on so that she never has to walk barefoot on slick surfaces, which, even when she is leaning heavily on me, makes her feel insecure.

Incontinence--Mom wears adult diapers 24/7. I recently found that brands are important; Depends don't work for us, or at least the mid-absorbent pack I recently brought home definitely did not!  We use Sam's Club and/or Wal-mart's store brand. We are so blessed that she has healthy skin that doesn't chafe or get diaper rash easily, but when she does we use Boudreaux Paste, a product whose full name annoys me but is the best I've found!

Medication--Mom takes two Alzheimer's drugs (work out a plan with your doctor), an anti-depressant (I think this is so important for Alzheimer patients), an antihistamine for her severe allergies (most antihistamines are contraindicated for dementia patients, again, check with your doctor), and a cholesterol lowering medication that was prescribed off label for her irritable bowel symptoms (Colestipol/colestid). People who have had Cholecystectomy (gall bladder removal) as Mom has often need a medication such as this, but I've always thought it might also be useful for those who have lost bowel control or have irritable bowel symptoms as well. Let's repeat my litany: check with your doctor! 

Mealtime--Mom very much prefers to be served meals in her recliner.  When she moved in with us I very much felt she should sit at the table with us at mealtime. This became a "choose your battles" issue which I finally allowed Mom to win, and she is much happier.  We have a wooden lapboard that fits across the arms of her chair and a side table to hold her drinks. The chair is leather and has a cloth cover that has to be laundered regularly. But, the key words are she is much happier.

Entertainment--Music from Mom's own C.D. collection plays constantly on the "repeat" setting. It was difficult to find a CD player for her--everyone now uses their MP3 players--but I found a 5 CD changer at Amazon and hooked my iPod speakers to it (WHY didn't the CD player come with speakers?).  Music is vital for Mom's contentment level, and the familiarity of traditional hymns is the most powerful mood enhancer for her. Films that have very little dialogue are best; Mom can no longer follow rapid fire dialogue that characterizes most movies. Bambi is a favorite, and Mom loves the That's Entertainment films. 

Reading material--sometimes people are surprised that Alzheimer patients may continue to read. Mom's short term memory is indeed shot, but in the moment she is in she is still able to comprehend a sentence or two of meaning. She loves the My First Little House books, and is not offended when I offer her beautiful children's picture books, but she also very much enjoys devotionals such as Richard Carlson's Don't Sweat the Small Stuff  and Max Lucado's writings.  She also peers intently for long periods at a daily newspaper, so I guess she retains some meaning or at least a feeling of being a part of the world from that. And, of course, I have her read a daily selection from the devotional I wrote just for her, Beautiful in Each Season.  The selection of music and reading materials depends entirely on the individual preferences of your patient. What did he/she enjoy pre-Alzheimer's? Find straightforward or simplified versions of what was enjoyed in the past. 

Schedule--I've printed her daily schedule on a piece of posterboard and placed it within her line of vision, along with her clock and whiteboard that has the day's date written in large letters. These things help her very much. Further and more detailed information is available in the post entitled How We've Managed Thus Far,

Phone--Mom loves her one touch phone. She can call me any time by lifting the receiver and pressing the key printed with my name. She is still able to read so instead of photos I printed names of family members on each key and programmed the phone with their numbers so that she is always able to reach someone.  When she calls several times in an hour I put a sign on the phone: "Linda is taking a nap, call if there is an emergency." This has worked so far. 

How I cope with "Why has this happened to us?"--A real change in my perspective occurred with the experience I describe in this post entitled Farther Along...
 Further information of the practical sort is available in the post entitled How We've Managed Thus Far. 

I'm praying now for every caregiver who reads these words, and also for your precious care recipients.  My heart goes out to you.  Let's pray for one another as we walk this caregiving path together. 

Monday, October 27, 2014

Healing Balm

I have suffered an attack of hip bursitis, which, as a helpful internet source tells me, occurs mostly in  middle-aged and elderly women. 


Bursitis often erupts following unaccustomed physical exercise. I had begun a brisk walking program, and in a burst of overconfidence chose to do my middle-aged/elderly version of a jog up and down a small hill adjacent to our house.

My right hip now hurts, especially at night. I am biding my time and praying to avoid things like doctor visits and cortisone shots, and if you would pray this with me I would be very grateful.

This morning I made my awkward, grumbling way out of bed and staggered over to the mirror that hangs above the old oak dresser. I'd not slept much, and though I ought to have reached for my Bible, had spent fruitless time worrying about my Alzheimer's mom and the future instead.  I leaned toward the mirror and examined the circles beneath my eyes in close detail, which did not improve my mood. Quoting Gideon, I addressed my reflection:  "If the Lord is with us, why has all this happened to us?" (Judges 6:13).

I now feel silly and melodramatic as I confess how upset I felt over an aching back and my healthy, albeit dementia-impacted, 90-year-old mom.  But there it is; this morning I placed my relatively minor trials on a par with being under siege by Midianites, and I felt I understood Gideon's plaintive question. Why, Lord?  If You are with us why do these things happen?

I wept a little (self-pity, no doubt) and then reached for a tin of Cloverine salve and applied the comforting stuff to my reddened nose. My poor nose is often irritated this time of year with seasonal allergies, and I'm always a little surprised at how much discomfort a stinging, chapped nose can cause. But when I carry my trusty container of Cloverine with me and reapply often, I have no discomfort at all.

At this I felt the little heart nudge that tells me the Lord would like to make a point, although I admit I was a bit hesitant to accept an analogy between the healing balm of Gilead and my humble pot of Cloverine. But the connection is obvious, even to a middle-aged (or elderly) woman who has a hitch in her get along and an Alzheimer's mom: I can receive healing and strength if I will liberally partake of Scripture and reapply as needed.

Cast all your anxiety on him, because he cares for you.  
--1 Peter 5:7

Monday, October 20, 2014


When I did an internet search for the word "respite," here is what I found:

noun: respite
a short period of rest or relief from something difficult or unpleasant
synonyms:rest, break, breathing space, interval, intermission, interlude, recess, lull, pause, time out

Every caregiver needs respite. I remember reading that Susanna Wesley would throw her apron over her face and at this sign, her 19 children knew she was not to be bothered because she was praying.  That was Susanna's respite, and bless her heart, the Lord did help her as evidenced by by the Godly children she raised (her boys John and Charles began the Methodist church, among other accomplishments).  

I find respite in prayer too, but unlike Susanna, I'm able to be outside quite often. This suits me, because nothing refreshes my spirit more than finding God in nature. I return from my daily walks a calmer, kinder caregiver. 

If you are on the front lines of caregiving, find your respite first in the Lord, and then look for that much needed oasis of rest (break, breathing space, time-out). God can strengthen us to bear burdens we never thought we'd be able to carry, but regular times of rest are a part of any strengthening program.

My respite comes in spending time on the farm with my husband, daily walks, and taking photos that attempt to capture the beauty in nature that I so love.  If you'd like to see the photos from tonight's appropriately spooky-for-the-season walk, visit the post at my farm blog entitled October Sunset. 

Monday, October 13, 2014

Good Times

Many caregivers find themselves members of the sandwich generation, caught between the needs of aging parents and growing children.  Because my mom's Alzheimer's has spanned ten years of time, I've experienced many sandwich-type moments, such as the day I found myself bathing my slippery and unhappy toddler grandson in the morning and my slippery and unhappy Alzheimer's mom that same night.

This time of life offers many moments of joy along with some times of frustration and exhaustion.  It is mostly good, and the sad or bad times cause me to cry out to the Lord, and that's good too. 

Today I've written a little treatise on the sadness and joy of being parents of adult children.  If you would enjoy reading about the yummy fall menu we served for a family dinner this weekend and how our momentary pang of sorrow turned to peace when our children pulled out of the driveway for their respective homes, hop on over to "Good Times Then and Now."

Tuesday, September 30, 2014

Struggle and Scripture

I'm struggling.  Especially in the mornings I feel so sad. As Mom's symptoms increase, I grapple with fear of how her Alzheimer journey might end.

For so many years I felt strong empathy for Mom, and I still am able to express love and minister to her as I've always done. But the other day she choked on a piece of food and I remained completely calm.  I assessed whether she needed the Heimlich, and saw that she did not (she was able to gasp for air and talk). I stood by, offered tissues, prayed, and considered whether I needed to call 911; although she could breathe, it was a violent and long lasting episode. In the middle of it Mom became angry that I wasn't "doing something" and between coughing fits she yelled at me for not being more concerned. That's when I knew she was all right.

She was mad at me the rest of the day, and I guess I can understand. Had it been one of my grandchildren I would have exhibited a much higher degree of anxiety. But because it was my 90 year old mother who has had Alzheimer's for ten years, and because I feel a daily dread of how her life might end and have steeled myself by envisioning various scenarios, I essentially detached emotionally once I'd ascertained I'd done everything I could do to help her.  She wanted me to act more upset, and clearly did not believe me when I patted her knee and said, "I'm sorry, you just have to cough it out."

"Easy for you to say," she said.

But it isn't easy. I don't like being so close to the Valley of the Shadow with my mother. Death is ugly, and while watching a loved one succumb so slowly to death by Alzheimer's is frightening, even more appalling is to be confronted by the possibility of an imminent and struggle-filled passage from life to death. In darker moments, I feel close to terror. It may sound wrong to say what is true; it is the discomfort of this situation that I hate.  I am uncomfortable with grief and fear, and although I've suppressed it, I do suffer a terrible empathy for my mother because she has lost touch with reality.  This is hard, and I don't like things to be hard.

If you read my posts often you will know this one is uncharacteristically dark. You will also know  that although I'm sad, I'm not in despair, and even when I'm afraid, I'm not without hope.  I felt led to share with you as honestly as I could how I've been struggling, but I'll close with the reasons I have courage for the path ahead:  

We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don’t know why things happen as they do, but we don’t give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going. These bodies of ours are constantly facing death just as Jesus did; so it is clear to all that it is only the living Christ within who keeps us safe.
--2 Corinthians 4:8-10 TLB

So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.

--Isaiah 41:10 NIV

The Lord is my light and my salvation—
    whom shall I fear?
The Lord is the stronghold of my life—
    of whom shall I be afraid?...
For in the day of trouble
    he will keep me safe in his dwelling;
he will hide me in the shelter of his sacred tent
    and set me high upon a rock...
Though my father and mother forsake me,
    the Lord will receive me...
I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living. Wait for the Lord;
    be strong and take heart
    and wait for the Lord.
--Psalm 27:1,5,10,13-14 NIV

But I trust in your unfailing love;
    my heart rejoices in your salvation. I will sing the Lord’s praise,
    for he has been good to me.

--Psalm 13:5-6 NIV

Blessed be His Holy Name! 

Monday, September 22, 2014

Even to Your Old Age

My mom was diagnosed with Alzheimer's in April of 2004 and is ninety years old.  Sometimes she behaves badly, and I've conditioned myself to attribute behaviors that would once have been categorized as sinful as now being just symptoms of her disease. That perspective is mostly accurate. Brain damage, confusion, physical discomfort, and frustration can cause temper outbursts and angry responses that do need to be accepted as disease symptoms.

However, I have to be careful not to interact with my mother only as a patient. She is still in possession of a living faith in God. She is still a human being, and thus is capable of sinful behaviors. And, as the following account reveals, she is still capable of conviction by the Holy Spirit that results in repentance. 

Mom had tried to reach me on her chair-side phone, and although I was just in the next room, I was on another call. So, my phone service sent her to my voice mail. Oh how I try to keep mom from ever getting that voice mail message, because it makes her angry every time.  I've re-recorded the message numerous times so that the current version features a placating, almost pleading tone of voice that assures callers I'll be back to them just as soon as I possibly can, but to no avail. Receiving a recorded message when she had hoped, as she always says, for a "live human voice" triggers vindictive anger in my mother, and in certain moods she will try to get even with me for the vexation this causes.  It took me a few minutes to finish with the other call, and in the interim Mom wrote in her journal, "I'm trying to think of something that will really upset Linda."  Her solution was to scream and pour her diet coke out onto the floor, and when I ran into the room she cut loose with a tirade of vindictive words. She said that for the rest of her life she would do everything she could to torture me and make me miserable.

She was trying to hurt my heart and although I remained calm and did not show it outwardly, she accomplished her goal. I went out of the room and prayed. I called two friends and asked them to pray for Mom. I then sat in a chair just outside her doorway and prayed some more. When I heard her crying I entered the room.

She was repeating, "Lord forgive me, Lord forgive me!" When she saw me she said, "I've always had this problem with pride and I am asking God's forgiveness, do you think it is too late?"

I assured her it was not. We prayed together. My heart felt the solace of Mom's sincere regret; although she had forgotten she had lashed out at me, she was remorseful because the Holy Spirit had convicted her of sin.  I assured her that the Lord had forgiven her, and in my heart I forgave her as well.

The best preparation anyone can make for the possibility of an Alzheimer diagnosis in the future is to nurture a relationship with the Lord in the present. It is incredible to me how the Lord continues to speak to my mother even in these difficult final years of her journey through Alzheimer's; Mom's faith is alive and well even though her thinking ability has been profoundly compromised.  God does not ever leave us or abandon us. We can trust Him to work in our minds and hearts until the day He releases us from these broken bodies and brings us home. 

"Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you" -- Isaiah 46:4

Wednesday, September 17, 2014

How to Grieve Like a Christian

There are some griefs so overwhelming and all-encompassing that we are stunned by loss. During those times the Lord sustains us; when we are blind and deaf from pain, He holds on. I don't think this post addresses grief of that caliber.

However, when land that had been in our family for 150 years sold recently, I grieved as though I was a child who had lost her home. As I sought the Lord regarding the soul-wrenching depth of this sorrow, the following guidance emerged: 

Remember that although you are cemented to a specific point in time, God is above time and space.  He is sovereign over your past, present, and future, and nothing is beyond His reach: "He is before all things, and in him all things hold together" (Colossians 1:17). 

Love does not die. A person, beloved place, or precious pet may no longer be with you, but to replace the reality of love with a shrine to grief is to replace what is real and will last forever  (love) with something that is transient (grief of loss).  "Love never ends" (1 Corinthians 13:8 ESV). "Gladness and joy will overtake them, and sorrow and sighing will flee away" (Isaiah 51:11). 

If loss of something of this Earth causes you to feel as though your moorings have been cut, use this opportunity to attach yourself more deeply to the Lord, because He will not abandon you. "God has said, 'Never will I leave you; never will I forsake you'" (Hebrews 13:5).  "I will not leave you as orphans; I will come to you" (John 14:18). 

Abstain from the forms of pain relief utilized by those who don't know the Lord. Discipline of the flesh allows the mind understanding of what the heart already knows: all is well. "Since we live by the Spirit, let us keep in step with the Spirit" (Galatians 5:25).  

Don't substitute another person or place for heart needs that can only be filled by a relationship with God.  "All my fresh springs shall be in Thee"  (Psalm 87:7 P.B.V.)

Refuse to exchange the reality of past blessing for the grief of the present moment. Grief is a temporary passage, not a permanent condition. " not grieve like the rest of mankind, who have no hope" (1 Thessalonians 4:13).

Make your heart's home in Christ, and through Him participate in the reality that encompasses all time and eternity. Past, present, and future, you are safe in Him.  “I am the Alpha and the Omega,” says the Lord God, “who is, and who was, and who is to come, the Almighty” --Revelation 1:8

Tuesday, September 16, 2014

Precious Memories Are Present Reality in the Lord

My mother's parents owned a farm in the Ozark hills of Missouri. Mom grew up there, in a little house that began as a one room log cabin when her grandparents homesteaded the place in the mid 1800's. My grandma always said her little house "grew like Topsy" over the years, with rooms added as the family increased in number. Grandpa added a porch and enclosed it, then built a second story, a kitchen, a bedroom, a utility room, and finally in the late 1950's the crowning glory: a fully plumbed bathroom.

When Grandpa was diagnosed with cancer at age 90, Grandma could no longer take care of him, and it was time for them to move to town. Grandpa lived only a few months after that move, and my mother signed over her share of the farm to my uncle, since he had agreed to bear the burden of caregiving for Grandma.  This followed a family tradition; a generation earlier my grandparents had inherited the farm in exchange for providing care for my great grandmother.

The little house that "grew like Topsy." The green portion on the left in this photo was a originally a separate "granny house," the precursor of what we now would call "a mother-in-law" addition. The room that connects it to the main house was added later, after my great grandmother passed away. She was bedridden for three years and my grandparents provided 100% of her care with no respite caregivers or social services to ease the burden.
The little house sat on a hill surrounded by lush pastures and tree-covered bluffs that offered a thrilling, 360 degree panorama of soul-nurturing beauty. My cousins and I grew up picking plums and apples from Grandma's trees and exploring the secrets of Grandpa's shop where a forge and anvil bore testament to his years as a blacksmith before he became a mechanic who worked on Model T engines. Our parents called this farm "down home," and it remained my heart home even when my grandparents were gone. My uncle and aunt razed the old house and built their new home on the site, and although I didn't visit often, I had the security of knowing that the property was still in the family. I could still go "down home" if I chose.
Tree-covered bluff and pond to the east of the house.
Pasture southwest of the house site.

My uncle was diagnosed with Alzheimer's last year, and a few days ago the sale of this property that had been in our family for 150 years was finalized.  This past Saturday I made one last journey "down home."

I was surprised at the intensity of my grief.  I felt embarrassed by my sorrow, as though it was somehow inappropriate. I knew that I should not grieve in the same way as those who have no hope in Christ (1 Thesalonians 4:13), but that Scripture passage refers to the loss of loved ones, not of a place.  How could an earthly location hold so much of my heart?  How could I, thirty years after any right of heredity had been signed away and over twenty years removed from the time Grandma's house was torn down, still manage to think of this earthly location as home, or believe it somehow provided me security? But I wept like a child over the final, irrevocable loss of this childhood place of happy safety, and a nightmarish sense of loss and homesickness settled over me.

In prayer, these thoughts came:

God is Spirit, and all times are "now" to Him. What was once real is still real in Him; all times belong to the Lord. I must not make an idol of this grief, take ownership of it, or label it as my own. To do so is to replace the reality of what exists in the past and replace it with a stone marked “my grief,” like Indiana Jones attempting to replace treasure with a worthless sack of equal weight.  His attempt did not work and neither would mine!  I can keep the precious memories--they are legitimately mine--but I can be rid of the grief.  My instinct is to hold onto the grief because it is in my present, and my access to the Missouri farm is in the past, out of my reach, but such an exchange replaces reality with sorrow.  Here is reality: I had grandparents who loved and provided for me, and I had beauty of the Missouri hills as my own. They will always belong to me because they once belonged to me.  No one can take them from me because there is no future or past in God; all is now! This goes beyond the platitude to "be comforted by your memories." It is more accurate to say, "Be comforted by your reality!" When I abide in the Lord, the glorious "now" of what was and is and is to be is mine.  All reality is "now" in Him. 

When we make our heart's home in Christ, we participate in the reality that encompasses all time and eternity. He keeps us grounded in Himself and does not allow us to find safe harbor elsewhere.  In God we are safe, and in Him all that was still is, and all that is will always be.   

“I am the Alpha and the Omega,” says the Lord God, “who is, and who was, and who is to come, the Almighty” --Revelation 1:8

Saturday, August 30, 2014

Take Heart!

Mom attacked me with a fountain of vindictively threatening words yesterday. 

I believe that if I hadn't been in prayer about how to respond she might have attacked physically.

I could not (and can't yet) chart the source of Mom's upset. I'd been patient and kind earlier in the day when she didn't want to bathe. I'd delivered cookies and coffee a short time before her outburst.  Pleasant words had been exchanged.  She had seemed content.

Reasoning with her and praying aloud for her did nothing. "I've thrown up a wall you can't get through. There's not one thing you can do about this," she said. 

A challenge that has been a blessing in disguise during our years as caregiver and patient is that Mom, probably because of the discomfort of an arthritic knee, does not like to make the effort to  stand.  Home care has been possible for her in part because of her disinclination to wander. As she used words to describe how she would spend the rest of her own life and hopefully mine torturing me, lying about me, and doing anything she could think of to make me miserable, she was safe in her chair and did not seem inclined to attempt to rise. I followed what I felt was God's guidance to quietly leave the room.

I texted two prayer partners to intercede for her and I called my daughter, who said she would bring  her children to visit Mom.  In the fifteen minute interval before my daughter arrived, I sat just outside Mom's room and prayed hard.  When my daughter arrived she found Mom reading her Bible.

"Well hello Sweety, how are you?" Mom said.

The difference between the vindictive anger of just a few minutes earlier and this calm greeting was incredible.  

Amazed by the difference in Mom in response to my prayers and those of my friends, I initially planned to write this post about the importance of steadfast prayer for care recipients (and this IS important). Satan has no respect for the weak and vulnerable, the opposite is true, and I felt if I'd only prayed adequately for Mom that the devil couldn't have had his way with her.  But as I prayed over today's events, I realized no caregiving error had been made, no gap left unprotected in our wall.  I was reminded that Jesus said, "In this world you will have trouble..."  In caregiving or any other mission field we can expect difficulty.  We may also expect that God will deliver us from it.

And so the certainty of God's deliverance is the point of this post. Attacks will come even when we are doing everything right (sometimes especially if we are doing everything right). These hurts will often come through loved ones, and we shouldn't be surprised by this.  We don't need to waste time with resentment or retributions.  When the devil attacks it is most expedient to pray and ask others to pray. 

The calm I felt as my formerly supportive and loving Mom attacked wasn't of myself.  It was as though the Lord placed a buffer between my heart and Mom's words.  I was aware of His presence with me, and I didn't feel anger, resentment, or even an aversion to Mom.  It was God's grace that enabled me to pray for her with love, and no blows landed on my heart.

My mother has Alzheimer's disease and thus has suffered brain damage. This is the physical basis for her behavior, and she will be headed to the doctor after this holiday weekend so we can be certain no other discomfort is bothering her.  Meantime I'll monitor her closely for any unusual physical symptoms. From her subsequent behaviors, though, I really think today's upset occurred in her spirit and emotions.  She ate a good supper, was not restless, made no complaint over her evening walk, and has slept soundly through this night.

We don't have God's promise that our caregiving journeys will be carefree.  What we do have is His promise of deliverance from trouble and His abiding, unfailing presence with us. 

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.--John 16:33

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

Wednesday, July 2, 2014

Caregiving Decisions: Pray Through to Peace

The single most important edict for a Christian caregiver is this: "Pray through to peace regarding caregiving decisions."  Whatever decisions you make for your loved one, pray and ask others to pray during that vulnerable and emotional time following a diagnosis of dementia. 

Do not let any one source convince you of the course of action you should take, but be open to the Holy Spirit's direction through prayer, God's word, and counsel with Christ-centered mentors and friends. 

Be patient with a spouse whose anxiety over your loyalty and a desire to preserve the status quo may temporarily drown God's voice. Don't trust the direction given by a dementia patient who may, out of fear, make demands and utter threats.  Another scenario is a patient like my mother, who selflessly recommends what she assumes is best for her caregiver in the mistaken assumption that things will work out well for her no matter what.  In each of these instances, the caregiver must carry the burden and responsibility of decision-making by following the Holy Spirit's lead rather than human counsel. 

Interaction with a dementia patient who is also a loved one may require the following interpretation guide:
When an aging parent says, "I don't want to be a burden," she really means "I don't want you to resent me." 

When he says, "I don't want to disrupt your lives," he actually means, "I hope your love and loyalty to me make any sacrifice you must give seem inconsequential." 

When she says, "I don't want you to see me turn into someone you don't know," she means, "I hope you can stay close to me even if I behave badly."   
Do not release a loved one to death before they have died.  Do not reconcile yourself to suffering you might have prevented because "That's the way he wanted it."  Do not too easily accept a sacrifice an aging loved one seems willing to make on your behalf when the sacrifice ought to have been yours, not theirs.

We serve a God who will go to great lengths to ease the suffering of just one of His precious lambs (even though as you'll remember 99 others remained temporarily without a shepherd, though safe in the fold).  When we are safe in the physical and mental strength of our productive years, God may ask us to make sacrifices on behalf of one little old man or woman who can no longer make decisions and has nothing left to offer.   

"Precious in the eyes of the Lord is the death of His faithful servants" (Psalm 116:15).  It is human nature to recoil from the decline and dying of a loved one.  But God will not only sustain, but bless as we care for those He loves, even if the dying process should stretch over years of a journey through Alzheimer's disease. 

A first, instinctive response is to recoil from the upheaval of our lives that active caregiving requires, but if this is God's will for you, stand firm.  Beware voices that say, "You just have to let go,"  or "He's just trying to make you feel guilty," or "You have to live your own life."  Do not let go of anything God has not commanded you to release. He will silence the dissenting voices so that in the end, even they will acknowledge that God's will has resulted in blessing. 

One further direction: do not trespass against your own heart. If God has anointed you as the primary caregiver for a loved one, He will also instill in you the strong desire to provide care. There are those who will interpret that strong desire as being about you and your emotions when it is actually the response of your heart to the Holy Spirit's direction and God's will.  If you go against a Spirit-directed urge, you will break your own heart and quench the Holy Spirit within you. 

Stand firm in prayer.  Few things in life are so important as praying through to confidence over the decisions you make on behalf of an elderly loved one.  Do not rule out either the possibility that God may ask for an extraordinary sacrifice of time and service, or that you will need to lay your loved one on God's altar in the faith of release.  God will very likely ask you to do both these things.  But you must pray through to peace whatever decision you make so that you may have the very great blessing and reward of one who says to the Lord, "Thy will be done."  

Monday, June 9, 2014

Two Sides of a Coin

Our local bookstore hosted its annual Author Extravaganza last Saturday afternoon, and I signed up in time to be one of the 40 or so authors present.

The man seated next to me teaches creative writing a nearby university. When he saw the title of my devotional for caregivers, he told me he had written a play about Alzheimer's.  I asked, "From what perspective?"

He looked a bit taken aback and so I explained, "I wrote my first book from the perspective of one who has to deal with a parent's illness, but the book I've just completed was, as nearly as I could manage it, from the patient's perspective."

"Oh," he said, "Well, the play is about people who have to cope with someone else's Alzheimer's disease."

I would like to see that play.  After ten years of caregiving, I imagine I would relate to the humor and pathos of the challenges his protagonists face.  However, I've become increasingly aware of the importance of taking time to imagine myself in in the patient's role.  This is not a comfortable exercise, but it is a necessary one if I'm to maintain compassion and empathy for my mom.

For example, this morning Mom yelled at me when I opened her apartment door at 8:00 a.m., though I was bearing her morning toast and coffee.  "I have been waiting to hear from somebody," she spat.  "I'm isolated in here!"

The echoes of parental authority reverberate in my mother's anger, and so it is especially difficult to guard my heart against damage from her accusations.  I placed her breakfast on her lapboard, then delivered a stern lecture. "Mom, look around you.  There is music playing, the shades are open onto a beautiful day, and this apartment is comfortable.  Instead of getting angry I wish you would give me the benefit of the doubt and assume everything is all right."

However, when I came out of her room I took a deep breath and made a conscious effort to put myself in Mom's place.  She had gotten up a little earlier than usual and emerged from her bedroom to find there was no breakfast waiting on the table by her chair.  She could hear no sounds from our part of the house.  As far as she could tell she was alone without prospect either of human interaction or her well-loved toast with jelly!

My new book is a devotional for dementia patients who love the Lord. Because music triggers memories and speaks comfort even when language skills have faded, each devotion is linked to a well known hymn.  Many of the devotions talk about having patience with those who provide care, even when those people are unjustly cranky or rude (!).  All of them remind the reader of God's love, because no matter what else our loved ones forget, we must not let them forget they are beloved of the Lord.  If you know a caregiver who uses the Kindle app on a phone, tablet or laptop computer, send them to Beautiful in Each Season: Devotions for You.  The book will be available in paperback in a few months and when it is published it will be listed at the same Amazon link as the eBook.  

My mother reads her spiral bound prototype of this devotional each day, and I really do think it helps her cope with me!

Saturday, May 3, 2014

Prayer, Physical Touch and Moderate Exercise

When Mom is moody or angry, I've learned to look for some physical source for her discomfort. I've read that urinary tract infections are especially diabolical for dementia patients because the symptoms can go unnoticed by the caregiver who sees only behavioral changes and may not connect them to a physical ill.  My mom has not yet been bothered by UTI's, but for the past couple of weeks a spring cold has caused her to take a downward turn.  She has been uncharacteristically withdrawn and often angry.

She became caught in a dreamlike state a couple of mornings ago, dozing in her chair, dreaming, and then waking up angry and convinced she had stated her case but no one believed her.  She could not tell us what it was she thought we did not believe, but was stuck in a repetitive set of responses that had no apparent environmental trigger.  It was almost as though she couldn't hear me as I repeatedly asked what she needed me to believe.  She kept saying, "I have never lied to you.  Why do you think I am lying now? Why don't you believe me?"  

At one point she began to accuse and threaten, saying "You are going to pay for this.  This kind of thing can't go on without people having to pay for it.  You are going to be very sorry.  I just wish I could be around to see it."  I was able to stay very calm.  I prayed for her and asked others to pray.  Finally I was able to convince her to allow me to rub lotion onto her neck and back.  I then washed and applied lotion to her feet, and during these ministrations her anger receded.  But for the remainder of the day she was uncharacteristically withdrawn and quiet.  

I'm convinced Mom's daily walk is one of the most powerful therapies we've been able to implement for her.  During the course of her cold virus, the weather was unusually frigid for April and very windy, and so we couldn't take her outside.  For nearly two weeks she went without that daily ten minute walk, and became increasingly withdrawn and depressed.  I walked her around the house but she didn't get that daily dose of sunlight that I believe is so important.  

Just two days ago the weather moderated and Mom's cold symptoms receded, and so we walked both yesterday and today.  This morning it is as though none of the difficulties of the past two weeks had occurred; Mom made her own toast and dressed herself without assistance. Through this time three caregiving strategies have emerged as being vital for Mom:  prayer, physical touch and that daily walk. 

Mom is nearly 90 and is in the tenth year since her Alzheimer's diagnosis.  Each time she loses ground I take a deep breath and prepare myself for the next phase of our Alzheimer journey.  But for now, Mom has recovered from both her depression and her cold, and we are enjoying these green and sunlit days of early May.