Good Medicine for a Weary Caregiver

This family of four penguins graced the tree skirt and child's rocker next to last year's Christmas tree. 

During my devotion time this morning it occurred to me that as a caregiver, my emotional and spiritual energy is most often directed toward cultivating perseverance as I navigate my way through grief of loss. This could be likened to a physical diet of meat and vegetables with nary a dessert in sight.

This morning I've remembered that God’s “foolishness” is wiser than the best wisdom of human beings. God is sometimes whimsical—how else do you explain penguins? The Lord’s playfulness is never heavy-handed or awkward, as when an old college professor makes an attempt at humor that he does not truly feel; but is as delicate as the perfect choreography behind the spring dance of hundreds of dragonflies in the air above my front yard. A book could be written about the “foolishness” of God, and it would be a beautiful book.

Last year at Christmastime, I purchased some appealingly funny, nearly life-sized penguins and placed them around my Christmas tree. This afternoon I think I'll put forth the effort required to dig through the back of the storage area beneath the eaves of our old house to find where I've stashed those penguins.

I'm praying for each of my readers right now: may the sweet relief of humor lighten your caregiving burden today.

Scripture: "For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength" (1 Corinthians 1:35).

Caregiver's Dilemma: Coping With Apathy in Dementia Patients

Note: the following entry is my December column for our community's local, online newsletter, thus the difference in tone from my usual blog entries.

On Easter morning, 2004, I slid into my customary pew at church with several minutes to spare before services were scheduled to begin. I noticed that my mother’s space at the end of the row was empty, and felt a glimmer of worry. She was a stickler for punctuality and never missed church. She taught me always to arrive early, especially for holiday services.

I excused myself and called Mom. “Oh, I just decided to stay home today,” she said. When I reacted with shock, she complied with my wishes and came to church, arriving twenty minutes late. This incident was one of many that let me know something was wrong with my mom.

Apathy is a common side effect of dementia, and is sometimes the first symptom noted. Dementia patients may display indifference regarding schedules in combination with an apparent lack of emotion toward concerned loved ones who object to their behaviors. Symptoms of apathy probably cause more conflict between caregivers and patients than any other early warning sign of dementia. A caregiver may have an intellectual understanding that the care recipient should not be held accountable for disease related responses, but it is difficult to transfer that “in the head” understanding to the heart. The tendency is to react to the loved one based on the relationship that existed before dementia occurred rather than to respond from a caregiver’s perspective.

Apathy may be a result of the physical damage that occurs as the characteristic plaques and tangles of Alzheimer’s disease wreak havoc in the brain, but there is a psychological and emotional basis as well. Forgetfulness and confusion cause dementia patients to lose confidence in the ability to successfully perform everyday tasks. Repeated failures can result in a reluctance to make the effort to try. People who suffer dementia often ask others to carry out tasks they are still physically able to complete, a behavior that in the general population might be labeled lazy or self-centered. However, for the dementia patient, requesting help is actually a viable coping mechanism that helps to compensate for failing memory.

When I respond to my mother’s requests with irritation, I take from her the dignity of retaining a measure of control over her environment. She has learned a new way to get what she needs—she asks!

It is only in recent years that Alzheimer’s disease has been widely recognized and diagnosed. There are doubtless a number of readers who remember a parent or grandparent becoming stubborn or demanding, and only in retrospect have understood that Grandpa’s “hardening of the arteries” and Grandma’s stubborn streak were dementia related. It is my hope that our current, more accurate understanding of the physical basis for the behavioral changes of dementia will ease the sad memories some of us have of the puzzling or hurtful behaviors a loved one exhibited toward the end of life. When my own mother goes home to be with the Lord, I pray to remember her as the vital and loving person she was before dementia robbed her of the ability to think clearly and respond appropriately.

Trusting

A friend's mother died earlier this week at age 85, after a ten year struggle with Alzheimer's disease.

My mother is 86.

This morning I went into Mom's room to perform my usual morning chores; I opened the shades, changed the date on her whiteboard, and filled the carafe with freshly brewed coffee. I used the TV remote to select the "easy listening" music station, and adjusted the thermostat to Mom's preferred 72 degree level. With the changing season and fluctuating temperatures, it is difficult to keep the room temperature just right; and it doesn't occur to Mom to put on a sweater if she is cold or to open the window if she is too warm. Furthermore, it is an effect of her Alzheimer's to make her believe that however she feels in the moment she is in is how it always is. So if she is too warm (or too cold) she feels exasperated and upset because she thinks this discomfort is her usual state, and not a seasonal anomaly.

Today things were unusually quiet in Mom's bedroom. I usually hear her on the baby monitor as she talks to the cat, or she will call out a greeting when I come into her room. This morning I did not hear so much as a cough.

You may think this odd, but I did not go into her bedroom to check on her. I left her apartment, came upstairs into my part of the house, and began making my bed and straightening my room. It was a blatant denial of the possibility that Mom might have passed away in the night. All the while the baby monitor remained silent.

In the corner of my bedroom is a basket filled with supplies I've prepared for my mom's funeral. I compiled these items at the time that we bought her prepaid burial plan five years ago, when I was asked to write her obituary for our funeral director to keep on file. He said that at the time of a death, people often are not thinking clearly, and it is good to give this necessary task thought and prayer ahead of time. And so, being forced to face facts, I went ahead and gathered items that I thought would make a nice service for my mother. There is a slide show of photos of her life, a collection of picture stands that will hold some of her oil paintings on display, a box of the pink, engraved cards that she included with each picture sold at the arts and crafts shows she attended, and a few of her journals with meaningful quotes highlighted.

Of course, as I cleaned my bedroom I tripped over this basket. "You can run but you can't hide," I thought ruefully.

It is human nature to seek escapism from things that are unpleasant. It is an ongoing challenge to balance the grief of losing my mother with the need to enjoy her in the days that remain.

Awhile later I did open the door to Mom's room and found her enjoying coffee and toast. She greeted me with her usual smile and so, for today, we have one another still.

Prayer: Lord grant me grace to enjoy my mother while she is here. Grant me freedom both from fear of losing her and from fear of being increasingly burdened by the care she may require. I place my faith in You, Lord. I know that You will support and sustain me through joy and sorrow, and through all the days in between. Amen.

Scripture: Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka (bitterness) they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion (Psalm 84:5-7).

The Pitfalls of Being Nice

A couple of posts ago I wrote about overextending myself to the point of exhaustion as I cooked, cleaned, and cooked some more for my son and a group of his friends.  In the midst of my labors I caught a glimpse of insight into my own motivations, and not all of them were selfless.  A good portion of my hard work was aimed toward gaining the admiration and appreciation of my son and his friends.  I loved taking care of them and seeing them around my table, but did I need to prepare a huge Sunday morning breakfast that none of them really wanted to get out of bed to eat?  No.

I have gained a new blogger friend named Carol Noren Johnson, who saw the aforementioned post, and in response shared her book, entitled Getting off the Niceness Treadmill.  In the book, Carol writes:

"We get pumped up on our niceness treadmill thinking of what we can do for someone else to the exclusion of our devotion to the Lord, who never needed us to do His work anyway...by helping others we may have short-circuited our own needs and responsibilities" (p. 7).  

"I am narrowing my focus on Whom and What I please.  Whom is God and What is what He wants"  (p. 47).

"Good deeds have to come from godliness purified by Jesus Christ as summed up in Titus 2:11-14"   (p. 63). 

"Now I dare to care not whether my giving is recognized or even outstanding.  Why have I needed that glory!  Off the treadmill!  I surrender to the Lord and His glory"  (p.64). 

"I can always say and mean it, "I will pray about my involvement with your need" rather than rush to help.  We need to see how the Lord will supply their needs"   (p. 66). 

"We crown Him, tremble before Him, offer our lives to Him.  We do not need praise. We glory that He is praised"  (p. 68).  

Aren't these great quotes?  You can find Carol's book at Amazon.com.  And, if you head over to her blog,  you'll see that she has reviewed a caregiving book that you may find to be of interest!

Changing Relationship Roles--Stressful!

Making the transition to the role of caregiver is especially difficult when the care-recipient is someone who once took care of you. When the loved one is a spouse or a parent, becoming that person’s caregiver brings a burden of grief as well as an increased workload. The combination of these two stresses can cause clashes between the caregiver and patient as each suffers through difficulties associated with changing relationship roles.


During the early days of my mother’s struggle with dementia, she suffered confusion and feelings of failure. She understood that her inability to pay bills and remember appointments was causing inconvenience for those around her, and she felt a deep sense of shame. As a new caregiver I was more likely to scold than to provide comfort and reassurance. Despite Mom’s Alzheimer’s diagnosis, I continued to respond to her as though she was the mother I’d always known.


One of the little frustrations I experienced with Mom was that she struggled to fasten her seat belt, and I had to help her. I didn’t say a word, but Mom had to know from my exasperated sigh and grim expression that she had failed once again. During that time I happened to read an excellent publication entitled “Pocket Reference of Tips and Strategies” by Coach Frank Broyles, whose wife, Barbara, was an Alzheimer patient. When his wife had difficulty fastening her seat belt, Broyles saved her dignity by telling her that all cars have seat belts that fasten differently. This one helpful tip served to be a catalyst for a change in my attitude toward my mother.


When Coach Broyles’ wife was diagnosed with Alzheimer’s, he approached her disease utilizing the same positive approach that made him the winningest coach in Arkansas Razorbacks football history. His “Coach Broyles’ Playbook for Alzheimer’s Caregivers” and the companion pocket reference book that was so helpful to me are available for free download at http://www.alzheimersplaybook.com.


When a loved one is diagnosed with dementia, there must be a release of who that person has been in the past, and acceptance of who they have become. This release is a process and not an event, but with much prayer and a network of support that includes guidance from caregivers such as Coach Frank Broyles, the transition can be made successfully.


Linda’s book, My Mom Has Alzheimer’s: Inspiration and Help for Caregivers, is available at Amazon.com. If you would like a signed copy, contact Linda through her website at http://www.godmomandme.com.

Tired Monday

My son, Jonathan (front) and his friend Nathan. In November Nathan will be married to his fiance, Becca.  What better way to celebrate an upcoming marriage than by shooting targets and fishing??!  They do have some incomprehensible-to-me male characteristics, but they are Godly young men of whom I'm very proud. 

Our son hosted a large gathering at our home this past weekend in order to celebrate the upcoming marriage of his friend, Nathan.  A group of young men gathered for a weekend of hunting, fishing, and skeet shooting; and I chose to have them gather around our table for meals rather than sending them to a restaurant.  The most I fed at any one meal was seventeen; and honestly, I loved it.  I cooked and baked and cooked some more, but I wore myself out in the process.  

God's grace has seen me through.  I don't feel well physically today but I know from experience that the Lord is going to strengthen me from His deep well of grace as I walk the path before me.

In the midst of all the hoopla this weekend, Mom sat placidly; reading, listening to music, and enjoying a somewhat higher quality and variety of food than usual as I brought her samples of my baking projects.  Thankfully, I've moved beyond resentment toward her for lack of support in my labors as she would have given me in the past. Throughout this weekend I felt only gratitude that she had no issues that would have cost me additional labor.

There are times in life when other people place burdens on our shoulders.  Sometimes, the freewill choices of those who love us cause them to need our support, sometimes there are accidents or diseases that could not have been avoided no matter what precautions were taken; and once in awhile, as with my cooking and cleaning frenzy of this past weekend, we place ourselves into jeopardy out of good intentions that we end up lacking strength to see through.  Whatever the cause--and most times it is probably a combination of reasons--we can find ourselves depleted and feeling taken for granted.

I'm always a little bit surprised that the Lord rushes so quickly to my defense when I'm aware that at least a portion of the discomfort I'm experiencing is self-inflicted.  No one forced me to overeat this weekend! But this morning I'm feeling so much gratitude to God for His unmerited grace. Today God's grace brings with it strength that is going to see me through this tired day.

Thank You, Lord!

Mother-In-Law Addition

Mom's window, her  personal source of light therapy.  The furry lump curled in the dry sink is Kitty, who provides pet therapy. 

Our house.  Mom's addition is on the right, with its own entrance and wheelchair accessible ramp. 

One of the many serendipitous outcomes of our somewhat impulsive decision to have mom come to live with us is the fact that her apartment is flooded with spirit-lifting light.   I had seen a bay window our builder had done in another home, and asked him to recreate a similar window for Mom.  I was thinking only that Mom would enjoy looking out at the bird feeder, and didn't give much thought to the fact that the window would face to the south. The resulting brilliance sometimes causes me to have to stand and blink for a few moments while my eyes adjust to the abundance of light when I walk into my mother's room.

And so, on  the few occasions someone has approached me for advice about how to build a "mother-in-law addition," I have recommended southern exposure and a large window.  Light therapy is one of the experimental treatments for preventing "sundowning" in Alzheimer's patients.  I am convinced that this abundance of light is one of the reasons Mom has done so well. 

In the 1920's, my grandparents built a "granny house" for my grandfather's mother.  It was a little square building that sat about 20 feet from the main house.  I often think of how similar my mother's situation is to her grandmother's, albeit with a few more amenities.  Mom's living quarters are separate from the rest of the house, and so we have our privacy and yet are close by.  She rarely comes into our part of the house, mostly because she is so much more comfortable in familiar surroundings, but also because we have cultivated the feeling that she is in her own apartment.  She has trouble remembering who lives in "the other part," as she calls it, and has learned that we respond to her as though she were Goldilocks checking out someone else's accomodations if she wanders into our part without our knocking first.   

Other factors that I believe have helped Mom to maintain her level of functioning for the past six years: 

• Prescription Medication:  Aricept, Namenda, and an antidepressant
• OTC supplements:  Fish oil, a decongestant, and a multivitamin
• Music, most often the "easy listening" channel on DISH TV, but sometimes Christian music or jazz.  
• Books--favorites include the Little House books by Laura Ingalls Wilder and, always, her Bible.  
• Spiral notebooks and an abundant supply of pens.  
• A refrigerator full of diet coke and a carafe full of coffee; caffeine has been shown to improve cognitive function
• Her own furnishings and photos surround her, most of which pre-date her Alzheimer's by many years so that she remembers them and is comforted
• A pet that provides companionship 
• Frequent visits from great grandson Daniel, age 2
• My husband and I are in and out an average of 6 times a day with meals and/or meds 
• Friend and respite caregiver Sandy visits twice a week
• Handicapped accessible shower and grab bars in the bathroom add to safety and convenience when I bathe Mom or when she uses the bathroom

This has been a wonderful solution for us. If you are considering building a "granny house" of your own, feel free to contact me through the customer contact page at my web site.  I will email you with further details of how we made our plans for Mom with the advice of an elder law attorney, and although I won't advise you what you should do in your own situation, I will be happy to answer questions about our way of handling Mom's Alzheimer's disease. 

Our solution would certainly not be right for everyone.  Mom does not wander, has never been combative; and although she sometimes discusses my negative personality characteristics with the cat, she is rarely openly rude.  She is still cognizant enough of what we do for her to speak words of gratitude.  This set of characteristics makes her somewhat rare, as far as Alzheimer patients go.  But I like to think that at least a portion of her easygoing ways has to do with the fact that she feels content and secure.

Any decision that impacts a loved one's living situation must be surrounded with careful thought and much prayer.  Every situation is unique.  If  you are struggling to find solutions for a loved one who has dementia, my prayers are with you.