Wednesday, July 22, 2015

Depression's Rx in Two Classic Hymns

This post addresses Christian coping techniques for the reactive depression of dealing with a sad or traumatic life event. It does not address major (clinical) depression.

 Depression is a lurking stumbling block for people who care for loved ones with terminal illnesses.  When a devastating diagnosis is handed down, most of us run like champions out of the gate. The first leg of a caregiving journey has a temporary feel; at first we have no trouble pushing our own  hopes and conveniences aside for the sake of our dear ones who need us.

But after awhile, when the shock has passed and the daily burdens seem heavy, we may become a little bit like Smee. Does anyone remember the character of Smee, Captain Hook's second in command in the film Hook (starring Robin Williams and Dustin Hoffman)?  There is a scene in which Smee, who has endured an entire career of enforced service to Hook, has an opportunity to grab some gold and make a run for it. He gives into his darker nature and pays for his treachery, but I'll always remember his Waterloo moment as he said, "What about Smee?  What about ME?"  https://www.youtube.com/watch?v=v1H6wOq75Ow 

I confess that these past few months I've struggled with intermittent episodes of depression punctuated by plaintive cries of "What about MEEE??"

I won't detail my lengthy and self pitying prayers as I outlined for the Lord my sorrow over the loss of the good but thwarted hopes and dreams I'd harbored for these past few years of my life, the years I've spent taking care of Mom instead. But do let me share with you the sweetness of the understanding He provided:

When we pray the salvation prayer, asking forgiveness for the humiliating sins we have been unable to conquer in our own strength, the transaction is completed when we give our lives to Him. The simple prayer that brings the cleansing purchased for us by the Blood of Christ also guarantees the incomprehensibly great gift of eternal life. From that moment, our Lord begins to gently remove the scales from our eyes so that we understand the truth of our situation here on Planet Earth: our lives here are heartbreakingly short. No matter how wealthy or powerful we are, we can't avoid suffering and death. Our only hope lies in throwing in our lot with the God who loved us enough to die for us so that we can live forever with Him. We are not our own, we belong to Him, we were bought with a price, and how He chooses for us to spend our time here is up to Him and not us.

Sometimes we don't even get a vote. This isn't unfair, what would be really unfair is for the Almighty God to go through what He endured for us, and then have us stomp our little feet and say, "I want MY way according to what my pea-sized brain can perceive right NOW. "  If we think about it even for a moment we quickly realize we do not want to dismiss the knowledge and wisdom of the plans of the God who loves us perfectly in favor of our own limited understanding.

It isn't as though He ignores our needs and desires; but when we are in grief over the death of our own dreams, we are blinded to the blessings He's provided. I found a blessed lifting of the sadness that has weighted me the past few months when I finally prayed the prayer that author Jan Karon calls, "The prayer that never fails."  If you are familiar with Karon's Mitford series, you know that prayer is "Thy will be done."   

As my depression began to lift it occurred to me that my secret to feeling better has been a sincere willingness to say, Have Thine Own Way, Lord along with the resultant ability to Count Your Blessings; wisdom epitomized in the two classic hymns of the same titles (if you have time, spend a little while praising the Lord as you read the lyrics to these precious songs--just click on the titles to navigate to The CyberHymnal).

Here are a few of the things I praised God for this morning, along with my prayer that your eyes are opened to your own blessings today.  Hugs and prayers, Linda

The view from my front porch. Locusts singing, birds calling, the air flower-scented; I ask you, how was I able to sink into self-focused sorrow with this outside my door?

Loyalty, love, and goofiness all in one pretty boy. 

The rosebush my kids gave me for Mother's Day 3 years ago. It's now over 6 feet tall and even wider than that. The name of the rose is "Dick Clark;" it was issued in his honor the year he died. That's one of its blossoms in the blog header above. Love it...and those precious grown up children of mine who gifted it to me.




Sunday, July 19, 2015

Rest

I don't have energy.

Mornings aren't too bad, but then I am exhausted in the afternoons.

I don't sleep very well.

When I come to the Lord in prayer I continually feel He is saying, "Rest, Child, rest."

Last spring I had a series of viruses and a terrible strep infection, and so at first I assumed my need for rest was from a physical ill. But that was nearly three months ago!  And so tonight I asked, "Why do I need all this rest, Lord?"

I'd no sooner formulated the question than understanding flooded my mind: I have vastly underestimated the weight of the burden I carry for my mother. I am exhausted by my responsibilities to her, depleted by the emotional roller coaster of her verbal abuse alternating with sweet expressions of kindness, and weighted by the grief of what I've lost along with dread of the further difficulties I'll have to face between now and the time my mother's Alzehimer's journey is finally done. I believe that once Mom is gone, my energy will return, but how terrible to know that the doorway to renewal passes through the valley of the shadow of death.

After an eleven year Alzheimer journey (we had paced ourselves for a predicted three year stint) I am  beyond discomfort over the thought of eulogies and choosing an outfit for the deceased to wear; I have rehearsed these things so often that I believe I will handle my responsibilities with aplomb. But my heart, dear Lord, my heart.  I am so weary.  This morning I prayed for a little sign of encouragement, but if the Lord has placed it before me, I haven't recognized it.

As I prayed about all of this, snippets of Scripture began coming to mind...pressed but not crushed...though they stumble they will not fall, for God will help them at break of day...no fear in love... 

 I've just clicked through to Biblegateway to find the references for each of these verses and lo and behold, here is my encouragement...the verse of the day at Biblegateway's home page is my life verse, Isaiah 41:10: "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).  

Tonight I'm really appreciating the Lord's promise to hold me up.

Fellow caregivers, don't underestimate the energy draining effects of the burdens you carry for your loved ones. Even if the physical labor is not intense, the emotional burden can affect you in ways you may not recognize. We have arranged for Mom to go to adult daycare at an area nursing home one day a week so that I can have another day away each week--I do grocery shopping and run errands on Thursdays when a local church lady spends the day with my mom, but I never take a day just for myself--I'll report back here to let you know whether it helps!

Here are ideas for finding options for respite care (remember, "respite" is support provided to the caregiver--for example, our respite care lady cleans my kitchen and bathrooms once a week as well as spending time with my mom):
  • Your Area Council on Aging
  • Your state's Department for Aging
  • The Alzheimer Association's 24/7 helpline -- 1.800.272.3900
  • Alzheimer's is a terminal disease, so consider calling your local hospice to see whether there are services such as bathing and administration of medications available through them
  • Familiarize yourself with services covered by Medicare--here is the link for the official booklet about medicare home health services: Medicare Home Health
  • Your local church, friends, word of mouth--this has actually been our best support base over the years. I always say that the little lady who spends time with Mom each week has saved my life, and I found her through our church.  
Prioritize rest and don't be hard on yourself if you need an afternoon nap.  Naps have become a fact of my life the past few months, and I praise God for the time and circumstances that quite often allow me to indulge this need. The difficulty with many of us is that we allow that feeling of "ought to be accomplishing something" to rob us of rest the Lord would provide.  Remember, He gives to his beloved sleep...(Psalm 127:2 RSV).   

Praying for you and grateful for your prayers,

Linda

Monday, July 6, 2015

Insights into a Mind Damaged by Alzheimer's

Coffee stained section from Mom's journal.
Yesterday I was shocked when I read Mom's journal entries for the day. I felt appalled by the complete disconnect with reality; the brokenness of expression revealed the extent of the brain damage she's suffered. There was an almost frightening singsong, sometimes rhyming but nonsensical pattern to some of the words she'd written.  I suppose the brain shrinkage from Alzheimer's along with the plaques and tangles that destroy neural connections can cause symptoms similar to those suffered by the mentally ill. After several pages of disjointed, sometimes illegible entries, Mom ended with these heartrending words:
Where is she? Her ticket say MO
That is where her farm home is.
(Mom grew up on a farm in Missouri)
I realized that I've underestimated the degree to which Mom's thinking processes have been compromised, and because of this I've been unkind when I have only intended to spur her to do for herself what I thought she was still able to do. 

Because my mother has a pre-Alzeheimer's established habit of recording her thoughts in spiral notebooks, her journaling has helped me make a list of reminders for myself that may help other caregivers as well: 
1) Don't assume that our patients understand more than they do. Pay close attention to their responses, even (especially) those that seem at first to make no sense.   
2) Do respond with love and acceptance to irregular behaviors.
3) Don't respond according to the past rules of our relationships with our patients.  In the past it might have been appropriate to respond to our loved ones' seemingly unjustified hostility with self defense or logical argument, but now such responses are ineffective and even cruel in light of the patients' compromised ability to think clearly. 
4) Be willing to try one strategy after another until we find ways to communicate effectively. 
5) Don't assume too much.  Arm ourselves with knowledge about the brain damage of dementia and how it impacts behavior. 
6) Remember that although the mind is damaged, the heart remains intact. Our loved ones still need  kindness, expressions of love, hugs, and approval.  Our disapproval still has the power to hurt.  

Monday, June 29, 2015

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.   



Thursday, June 25, 2015

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


Friday, June 19, 2015

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 

Sunday, June 7, 2015

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.