The Integrity of a Heart That is His

Anger is a common symptom of patients who suffer traumatic brain injury. When the cause of damage to the brain is an accident, physicians and loved ones are saddened but not shocked by the patient's angry outbursts. However, when an Azheimer patient exhibits anger, we are less likely to draw a correlation between the person's disease and his/her behavior. There are several reasons for this; Alzheimer's often progresses so slowly that changes are gradual, and although we accept the forgetfulness of dementia, we sometimes don't think much about the changes in the brain that cause the memory loss. Alzheimer's patients may look and sound much the same as they always have, because most of the changes of the disease take place within the brain, out of line of our sight and understanding.

I want to share something that will sound a little (or a lot) silly because it is based on an emotional ignorance of the effects of the damage that has taken place in my mother's brain as the result of her Alzheimer's disease:  because of her outbursts of virulent anger, I've been concerned at times for her salvation. She has said such shocking things; such as "I'm thinking of ways I can make myself go to Hell." In her dark moods she is vindictive, and says negative things about the Lord. If her anger was directed only at me, I wouldn't have been overly concerned, but her negative words about our Lord have both shocked and frightened me. 

This isn't a case of worry about whether Mom has accepted Jesus Christ as Lord and Savior. For those who suffer fear for their loved ones who have never accepted Christ, the Lord has provided the comfort I recorded in an earlier post (September 18, 2010 "What if My Loved One Is Not Saved?"--be sure to read the comments as well as the main body of the post). My fear for Mom  wasn't over whether she had ever been saved, I knew she had; but her outrageous behaviors brought to mind various Biblical passages that talk about an unforgivable sin or losing what we have gained through Christ.

As I prayed for Mom a few nights ago, this thought came: Your mother is saved. Words spoken from the deceptions of a damaged brain do not taint the integrity of a heart that is Mine.  

I've written this post for those of you who have suffered similar feelings of unease about a loved one with dementia whose behaviors are sometimes shocking, sinful, and even might be categorized as evil.  My mother can't give herself over to evil, because long ago she gave her heart to Christ. Although her thinking has been compromised and her emotions sometimes run out of control because of the deceptions of her damaged brain, the Lord holds her heart safe in His hands. Be reassured that once we give our hearts to Jesus, we are not our own to give away.

Click HERE for the Alzheimer's Associations brain tour and a slide show about the changes that take place in the Alzheimer's-affected brain.   

Compulsive Behaviors

During an earlier stage of her Alzheimer's disease, Mom went through a lengthy phase of picking at the skin on her neck, arms, and ears. She said she did it because she liked to do it and no strategy I implemented was very effective to stop her.  Common suggestions for such problems include keeping the nails trimmed very short and providing small objects to keep hands busy, but these efforts didn't help Mom.  More effective were engaging videos, a walk, or other activities that removed her from the environment where the behavior was most likely to occur: her beloved chair.

Picking at the skin is dangerous because of the possibility of infection. During Mom's skin picking phase I bathed her scabs morning and evening and applied antibiotic ointment. Bandaids were useless because she would immediately pick them off.

Mom has stopped these compulsive behaviors and I'm not certain whether they may recur or if she has moved on in the development of her Alzheimer's disease to a stage when compulsive behaviors are less likely.  The skin on the back of her neck bears scars but the wounds have healed.

This was a frustrating time and I had to fight anger toward Mom because it often seemed the behavior was rebellious.  It was almost as though when she knew this was something that upset me, it gave her power over me, and so it became important that I projected acceptance.  We got along much better when I did not act surprised or angry when Mom picked at her skin. A matter of fact dressing of the wounds along with distraction to an activity such as a snack or a video worked much better. 

There are helpful articles about compulsive behaviors at the sites below:  (not certain you can access the first link unless you subscribe to the Caring Right At Home Newsletter at caring.com):

Caring.com - Picks Obsessively at Skin or Small Objects

Mid to Late Stage Caregiving Packet from the Alzheimer's Association

Good article on "bad" behaviors from agingcare.com

Caregiving Strategies Following a Downward Turn

Mom has lost ground the past six months. If two people carry on a conversation within her hearing, she becomes upset because she can't keep up with the rapid give and take flow of meaning.  "I can't hear a word you two are saying," she'll say. I don't believe the difficulty is her hearing, I think she's having trouble processing quickly enough to comprehend meaning.  SO--I need to provide one on one conversations, speak slowly, and ask questions. Mom loves to be the center of attention, and if I will ask general questions that don't put her on the spot, she shines. She can expound for a long time using her own sometimes creative thoughts as a springboard for conversation.

She can no longer follow dialogue on TV.  We tried an episode of Little House on the Prairie today and she became very frustrated.  "They are just spouting gobbldygook!" she said.  "They are trying to drive me crazy!"  SO--I need to collect more children's films that have very little dialogue.  She loves Bambi because the animation is adorable and the film has only about 1000 words of dialogue.  I have a video of narrated Beatrix Potter tales that I think she will enjoy; the pace is gentle, and the camera moves slowly over stills of Potter's original illustrations.  As a former teacher I've noted that newer children's books often have more frenetic color and dialogue than those from years ago, and so I've ordered Mom these videos of narrated children's books from years past:  Make Way for Ducklings and More Delightful Duck Stories, and Caldecott Favorites featuring The Snowy Day. (If Mom doesn't like them, the grandkids will--and if they don't I will!) 

Mom used to enjoy a wide variety of music from classical to jazz.  But recently jazz music depresses her.  Perhaps it brings memories of lost youth, but each time I've played a c.d. of the jazz selections she used to enjoy, she has been brought almost to tears. "I just wish I still had a husband," she said.

SO--today I selected a TV channel that plays classical music, but this disturbed her as well.  "This is too much, too fast," she said.  So I put the same ol' five c.d.'s into her player that we've found through long trial and error to be pleasing and calming for her--two gospel c.d.'s, a quiet piano selection, and two c.d.'s by the Bill Gaither trio. "That's better!" she said.

Each time Mom has a downward turn I find I have to transition again through stages of grieving.  We've been struggling the past few months as I've experienced those old, familiar emotions of anger and betrayal, and I have had trouble not expressing those feelings in interactions with Mom.  Her increasing confusion has caused her to feel angry, and that sure doesn't help.  But I'm finally emerging from this latest sad time into acceptance, and am gearing up to meet this latest set of caregiving challenges.

SO, for a late mid-stage Alzheimer patient try these strategies:

--choose films & TV that move at a moderate to slow pace with engaging images and as little dialogue as possible
--try children's books with beautiful pictures on cd to read along or dvd to watch, look for gently paced dialogue
--speak slowly and directly to the person, don't talk over his/her head to another person in the room
--ask general questions that don't put the patient on the spot, and be tolerant of creative/imaginative stories
--remind yourself that the person's behavior isn't personal, it's the disease process, and that the Lord is with you both.
--and remember...love is patient, love is kind...

With prayers for my fellow caregivers, and appreciating your prayers for us,
Linda 

Isn't That a Little Crazy?

Our pastor preached a thought provoking sermon today.  He talked about how Jesus was sometimes judged by others as being out of His mind (Mark 3:21), and how as we attempt to bring about God's will on Earth, that we will sometimes be judged as being crazy as well.

He went on to talk about how easing human suffering entails a kind of self-sacrifice that is not deemed wise in the eyes of the world. I relate because my decision to provide care for my mom in my home for eleven long years has sometimes been criticized as being not only unwise, but I have also been accused of being self-serving. For example, a gentleman in the audience of a panel discussion of which I was a member spoke in an accusing, angry way when he said, "Your emotional need to be a martyr leads to a self-sacrifice that is unnecessary. Other people could do just as good a job caring for your mother.  And don't you think you do wrong by writing books that advocate others make this same kind of a ridiculous and unnecessary sacrifice? No one should be encouraged to do what you've done."

As I am prone to do when accused, I fell back on the sound basis of every decision I make; "God told me to do it!"  And of course, although this is an accurate short answer, it made me sound, if not crazy, then quite a way out on the proverbial limb.  

What I ought to have said is this: I never--repeat NEVER--advise that other people follow the path I've taken with my mother! What I do recommend is that you seek medical, legal, and pastoral counsel and then make the decision that is best for your unique situation. For me this translated into praying and asking others to pray, discussions with my mother's health care providers, and seeking the counsel of an attorney who served on the board of an area nursing home.

I explained our decision in my caregiving book as follows:

We truly had an unusual set of circumstances. I am an only child, and so the decision could be made quickly, without the collaboration that is appropriate when several families are affected by any decision that is made. My father had left a retirement fund that was just the right amount to pay for building an addition onto our home so that Mom could have a space of her own, affording our family a degree of privacy. My mother was not delusional or paranoid, and she handed over her finances to me with an attitude that changed quickly from trepidation to relief. She disliked physical exercise and so was not prone to wander away. Her income was adequate to allow her to pay me a small salary to care for her, and this in turn allowed me to cut my teaching job to half time without financial strain. We had not planned for these circumstances, beyond the fact that my father had been diligent to save money from each of his hard-earned paychecks.

I always want to emphasize the fact that the term “caregiver” applies to any individual who feels ties of love and responsibility toward an individual who is infirm. The daughter who visits her mother weekly and manages her mom’s finances is a caregiver. The son who lives across the country but calls the rest home frequently to ask for reports on a parent’s condition is a caregiver. Every situation is unique, but God is Sovereign over them all.  My Mom Has Alzheimer's: Inspiration and Help for Caregivers, Bridge-Logos Foundation, 2009, p. 272

As I drove home from church today, further thoughts on the perils of being judged a crazy Christian came to mind. Christians know this world is doomed to destruction, and so our goal is not to save the planet, but to save the people who live on it (2 Peter 3:10-12, Luke 4:16-20). We don't strive to bring Heaven to Earth, we plan to escape from this doomed place with as many freed prisoners as we can tow along with us, and then to inhabit the new Earth that God Himself will bring forth at the end of the age (2 Peter 3:13). Our goal is to do what is necessary to liberate those who are bound by the confines of the teachings of this hopeless world into the freedom that is ours in Christ. Although we may be called to ease human suffering, this is something we do that exhibits the overwhelming kindness and compassion of our Lord, and is not the end goal of our faith. Our primary goal is to draw all people to Father God by the power of the Holy Spirit, through our Lord and Savior Jesus Christ (Matthew 28:19).  Our focus is on Christ, and our ears are open to His call.  I am aware that He may sometimes call us to gut-wrenchingly difficult decisions. He may very well ask us to do things that appear crazy in the eyes of those who do not know Him well, and thus they think He would not possibly ask us to do outrageous things. 

It turned out that the man who accused me was angry with his wife's sister, who had chosen to care for her mother in her home, and had asked him and his wife to help. He felt it unfair that he should be railroaded into spending time supporting someone who had made a crazy decision.  I know nothing more about this situation, whether the sister's choice to care for her mother was based on emotion or prayer, avarice or sound counsel.  But I do wish I'd recovered myself in time to assure that gentleman that sometimes it is ok to be a little crazy if the Lord is with you in it.