Caregiving Decisions

Note:  This post is aimed toward those who feel  convinced they need to take care of a loved one at home and are experiencing opposition from well meaning family and friends. Every caregiving situation differs. If your heart tells you that you can't care for your loved one at home, please understand that there is no disgrace in finding a suitable long term care solution, in fact, when a patient's needs have escalated, this becomes the kindest and safest solution for all. As one nursing home administrator told me, "We have a staff of 40 people. You are just one person. We can do a good job for your mom."  Mom is still at home with me, but at the point I can no longer meet her needs, she will be blessed by nursing home care. 

***

 If you are prayerfully led to take care of someone whose suffering can be alleviated by your service, be cautious about how to proceed as you face criticism and complaints from those who fear there will not be enough of you to go around. It is difficult to face down naysayers, but God is our help, and we must realize that if we turn away from a Holy Spirit fueled desire to provide care for someone we love, heartache will result.

The Biblical book of Esther tells of a young woman who was called to serve her people in a difficult way. When she attained the position as queen according to God's plan to deliver His people, she balked at the danger fulfilling this call would bring to her. Her kinsman, Mordecai, was strict with her: "For if you keep silent at this time, relief and deliverance will rise for the Jews from another place, but you and your father's house will perish. And who knows whether you have not come to the kingdom for such a time as this?"  When God has placed a call on our lives to minister to those who are suffering, there will be fears to face and answers to provide to those who don't understand.

Yes, we need to take care of ourselves, we need to be prudent, and we should take into account the needs of other people who depend upon us. But we must not allow fears, our own or those of those who love us, to derail us from service that God has called us to fulfill. Our Lord is able to meet the needs of our loved ones either through us or in some other way. What is important is that we pray through to peace about every decision we make that impacts the lives of those who are no longer able to speak for themselves. 

These posts may help you if you are in the process of making caregiving decisions for a loved one: 

Caregiving Decisions: Pray Through to Peace

Making Decisions for Dementia Patients: A Christian Perspective

Right Where I'm Supposed to Be

Remember How She Loved You...and Still Does

Night falls so rapidly in December, and early too.

I know my mother doesn't like darkness staring at her from her bay window;  I don't like undrawn shades at night myself. But this evening it was 5:20 before I noticed that afternoon had faded to an early night.  Sunset in my area was at 5:04 p.m.

I decided to prepare supper for Mom before I went in to pull her shades. She's always happier if I am not empty-handed when I appear at her door, especially when it is near meal time.  If I thought about the darkened window at all--and I don't think I did--I would have concluded that the lit Christmas village on her window sill would keep Mom's attention from the undrawn blinds. Supper preparation took about 15 minutes.

And so by the time I entered Mom's room, she had probably been staring at the dark windows for thirty minutes or so. I don't know why she didn't call me as she usually does when she wants her shades drawn, and I don't know why that this evening it bothered her so much; sometimes she is absorbed in journaling or reading a book, oblivious to the window. But tonight she was angry, and I think she had drawn the conclusion that I'd left the shades undrawn in order to torture her; thus she fell to the mindset of a victim who wishes her torturer was gone from the face of the earth.  As I covered her feet with a warm blanket  and placed her supper plate on the lap desk before her, she let loose with a venomous string of hate-filled words that literally left me reeling. I did not at first connect her anger with the undrawn shades and was stunned. 

I'm blessed to have children who pray, and texted off a prayer request to each of them.  My son called and said, "You know, Mom, the other night when Dad came to help me with my remodeling project, I thought about how loved I am and how much you two have done for me out of that love.  And I thought how painful it would be if either of you got Alzheimer's and turned against me, and that helps me to pray for you more with Grandma. But I also know if that ever does happen that remembering how much you all love me now will help me to know that anything negative is just the disease."

How often we hear that, "It's just the disease." But tonight the truth hit home for me. Alzheimer patients believe their caregivers know everything. If they have pain, they think the caregiver knows. If a tooth hurts, or nausea strikes, or a darkened window frightens, a dementia patient believes the caregiver knows all about it and leaves the problem unaddressed. And they are prone to believe that this lack of action indicates that they are unloved. The hurt that flows from this sense of being uncared-for is probably the source of the most of the angry words and actions they exhibit that cause us as caregivers so much distress. It isn't their that their love for us has died, it is that their perceptions are inaccurate.

My children and I prayed together for Mom. Their love was such a blessed balm tonight. When I went in to see Mom awhile later she was happy and calm.  "You are just wonderful to me Sweetheart, thank you," she said.

Our tendency is to dismiss the positive because there has been negative, but that isn't love's way. My son reminded me tonight of something I really had forgotten: my mother loved me and supported me for the first 50 years of my life. That hasn't changed; the eleven subsequent years of our Alzheimer's journey can't undo those years of her love and service. Mom loved me, and loves me still. Anything negative is just the disease. 

Emergency Fudge

Sometimes I think those of us who considered ourselves good parents when we were raising our children make caregiving errors as we attempt to do a good job taking care of a loved one.  The rules for caregiving are somewhat different than the rules we imposed upon our kids for their own good, particularly if the patient is elderly.

My mom has no dietary restrictions, and she likes her desserts.  When she first came to live with us I rationed her sweets, substituting fresh fruit and things like carrot and celery sticks for the crackers and cookies Mom preferred.

What was I thinking? Was I concerned about long-range ill effects?  The woman is 91 years old and is suffering from a terminal disease! Though I do pay attention to her nutrition and make sure she receives balanced meals each day, Mom's happiness and the impact the food she receives has on her perception of well-being need to influence my decisions about the snack foods she is provided.

This is how I've come to have a stash of emergency fudge in the freezer. When Mom is in a dark mood, I bring her a generous piece of fudge and a cup of decaf.  This cheers her up Every. Single. Time! The only problem with this system is that my husband and I also like the fudge very much, and thus it is difficult to keep a dependable supply on hand.

We think my fudge recipe is delicious, and it is lower fat than most. I'm sharing it here as a gift to caregivers and patients everywhere. During the stressful holiday season, most of us could benefit from a having a stash of emergency fudge on hand.

Yummy Easy Fudge

12 oz package of semi-sweet chocolate chips (I use Ghirardelli brand in the gold package)

14 oz can of Eagle Brand Fat Free sweetened condensed milk

1/2 teaspoon vanilla

Handful or two of mini marshmallows

Melt the chips and sweetened condensed milk together in the microwave--about 1 minute on high.  Don't overheat--the chips will keep their form until stirred. Stir until smooth, add marshmallows and stir until they melt. May need a few more seconds in the microwave. Stir in vanilla. Pour into a buttered 8x8 dish. Wrap well in plastic wrap and refrigerate or freeze.  

Merry Christmas!

Caregiving Routines

 Each time Mom takes a downward turn, my first impulse is to say, "Ok, this is enough, I can't handle it any longer." But I've found if I'll give any new difficulty just a bit of time and prayer, things tend to reconcile.

The most recent caregiving challenge for me has been the necessity of administering a daily sponge bath to my mom. Both Mom and I resisted this transition! You'd think after 11 years as a caregiver, I would know that exhorting Mom to do a better job wasn't going to help, but I nevertheless tried this ineffective strategy for several weeks before it became apparent even to me that she had lost the ability and initiative to bathe independently. And then we had to get past Mom's resistance and resentment. That was the biggest hurdle for us, and was surmounted by my friendly but relentless insistence that bathing had been ordered for her by her doctor (I'm sure he would have ordered it if I'd asked him to...) and just had to be done (tinge of regret and empathy, firmness in my voice). For a couple of months she resisted my help but over time she adapted to my assisting her in this way. Things are much easier now, just a normal, not-too-time-consuming part of each day. 

Every caregiving transition has been characterized by these steps:

1)  Denial--I deny that Mom has lost ground and try ineffective strategies--or stick my head in the sand and pretend nothing is wrong (if I ignore the problem maybe it will go away).
2) Resistance--I resist having to do more caregiving work, and Mom resists my intrusion into areas that have previously been fully under her control.
3) Upset--characterized by a fairly tumultuous transition phase during which even calm and kind firmness on my part may be met with anger and resistance on Mom's part.  During this phase I know it is ineffective to lose my temper, but I generally lose my temper anyhow. I also know it is fruitless to allow my my feelings to be hurt by the spiteful resentment of a dementia patient, but I generally get my feelings hurt anyhow. 
4) Resolution--Mom and I both adapt. Dementia patients can learn new behaviors, but it takes many repetitions and gentle insistence on the part of the caregiver to establish effective new routines. These routines will eventually provide the security of familiarity for the care recipient.   

Some situations are intolerable and should not be endured over time. I would never recommend that a caregiver submit to violence or constant verbal abuse in the hope that the situation will somehow improve.  But I do want to encourage caregivers, myself included, to always give a new challenge a little bit of time before giving up. When needed changes require the cooperation of a dementia patient, we must allow some time for those changes to occur.

***

Related posts: 

Caregiving Strategies Following a Downward Turn

Helpful Products for a Hard Time

Bath Day 

When Words Hurt

We must pray protection over the minds and hearts of our care recipients, because the devil has no compunctions about using the vulnerabilities caused by disease as conduits for his attacks. 

My mother's infrequent bouts of verbal abuse almost always happen while I am cleaning up a toileting mess, and though I do my best to be cheerful and matter of fact, she feels embarrassed. It is my theory that embarrassment triggers defensiveness, but whatever the cause, it is soul withering to have someone who is supposed to love me spew words so hateful and hurtful that I’m brought to tears, especially when I’m often on my hands and knees scrubbing waste from the floor when it occurs.  At times like these I’m helped somewhat to recognize that in her right mind, Mom would never treat me like this. When hatred flows through her toward me, its source is from the enemy, and the Lord is my shelter from evil attacks. It helps to pray for Mom while she is being hateful. This keeps me from responding in kind, and sometimes defuses her attack. 

In the past few weeks I've kept a list of some other situations that trigger Mom's negative behaviors and the solutions that have worked for us.  I hope these help others: 

• Even if you were able to be a perfect caregiver, your care recipient would still sometimes exhibit negative behaviors. Dementia patients are often influenced more strongly by inward cues rather than environmental cues. This means that physical discomfort or negative thoughts can have a stronger influence on patient responses than anything we as caregivers can do to reassure or comfort. 

• Don’t try to reason with an angry dementia patient. I have learned that my mother will cling to her emotion with the tenacity of one who has lost everything but what she knows she feels. The emotion is real to her, and no logical reasoning or kind words can make a dent in her conviction that her anger is justified. Much more effective are strategies of distraction such as offering an appetizing snack or a showing a favorite movie.    

•  Lying is not ok, and we should never make promises we do not intend to keep, but some of us have a commitment to strict accuracy of detail that is not helpful in dealing with a dementia patient. For example, when dementia patients refer to deceased loved ones in the present tense, it is cruel to continually remind them that the loved ones have passed away. Another category of appropriate stretching of the truth is when the patient balks at some practice that is necessary for health and well-being. I tell my mom, who resists bathing, that the doctor has prescribed a daily sponge bath to help protect her from skin rashes (she doesn’t have rashes, and the doctor didn’t say she should bathe—though he would probably agree if I asked him!). Mom can’t take instruction from me, but, like many of her generation, a doctor’s orders carry authority for her. 

• When memory of the immediate past is nonexistent, a dementia patient has only the present moment. Mom knows that when her digital clock says 12:00, she should receive lunch. If I am late with her lunch only one time in a six month period, she will ask, “Why is my lunch always late?”  And she is angry because in her mind this situation is not acceptable. My best strategy is to apologize, promise to do better, and to know that in five minutes Mom will have no memory of my perceived negligence. 

My mom was and is a positive and Christ-centered person. She often, even now, expresses love and appreciation for me. I must not allow her Alzheimer's-related negative behaviors to compromise my ability to love and appreciate her for what she has been and even for what she often is still, despite her disease. 

       

      It is  helpful for us as Christian caregivers to remember that hatred has its source from the enemy of our souls. We must pray for the ability to love our care recipients with God's love and continue to pray for them, even when the enemy uses their vulnerabilities to aim his poisonous barbs toward us.  

Cumulative Effect

Dementia can rob the ability to remember which loved one dealt which hurt over the years, so that the expressions of anger and resentment the primary caregiver must endure from the patient are the cumulative result of the sorrows of a lifetime. This, along with the patient's loss of ability to filter emotions and monitor his/her words, can be devastating for the caregiver, and it is nearly impossible not to receive hurt.

It is difficult to avoid holding the patient accountable, even when we understand the dynamics behind the hurtful behaviors. I think we as Christians are especially hard on one another; we feel that Christian dementia patients ought to have forgiven all those people who caused them pain in the past. And indeed, if any of us were capable of beginning an Alzheimer journey with a perfectly clean bill of spiritual health, I imagine we could be sweet, encouraging, and loving patients who never caused our caregivers a day of sorrow.

In other words, perfect people would make perfect Alzheimer's patients. But of course we aren't perfect, none of us; all have sinned (see Romans 3:23).

Even with perfect cognitive health, all of us have one or more people in our lives who take the brunt of our emotional stress because we feel they deserve it. We hold our spouses, parents, and sometimes our own children accountable for the state of our emotional health, and they let us down. And so we feel resentment, and that resentment becomes a vehicle for our hurtful words and actions. In health we are more subtle than an angry and hurtful dementia patient; we aim our blows more carefully.  But the sin of failure to love as we've been loved and forgive as we've been forgiven is present within us all.

As healthy individuals, we need to look to a future when our ability to monitor our sinful responses will be lessened. This provides some motivation to, on a daily, incident-by-incident basis, forgive those who have trespassed against us, but the greatest impetus comes when we look at our Savior's face. Reflected in His gaze, we see ourselves as the sin-tainted creatures we are, and humility fuels our gratitude to Him for loving us enough to die for us. As we look steadily at Him, we understand that we can love others as He has loved us; sacrificially, with compassion, taking blows we do not deserve for His sake, forgiving as he forgave us.

It isn't surprising that people are sinful, and it isn't just the mentally compromised who need compassion and forgiveness. We shouldn't be shocked when our fellow human beings are hurtful or make excuses for the sinfulness that resides in each one of us. We are only protected from the tyranny of resentment through forgiving and being forgiven. 

As caregivers we need the ability to respond with compassion to those who have lost the ability to monitor their emotions and words even when they cause us pain, but we also need protection from the harm caused by hurtful words and actions. Praise be to the God whose love covers our sins, enables us to forgive, and heals our hearts. 

Caregiver's prayer: Father, please protect my heart and grant me the ability to respond to my loved ones with Your compassion and love. Please keep me from reacting to hurtful behaviors in sinful ways and forgive me when I fail; Lord please heal my broken heart. Help me to love and forgive as You have loved and forgiven me, in Jesus' name I pray, amen.

Scripture:

Put up with one another. 

 Forgive. 

Pardon any offenses against one another, as the Lord has pardoned you, 

 because you should act in kind.  

But above all these, put on love!  

Colossians 3:13  The Voice

Trust

In the spring of 1980, my husband and I learned we were expecting our first child. Many of the events of that year of promise are recorded in my novel, The Children Are Tender, but the fictionalized version of that pregnancy does not include the despair I felt as I wasted away due to Hyperemesis Gravidarum, which is extreme morning sickness that results in loss of more than 10% of one's body weight. And then, in my third month, I suffered a series of viruses culminating with one that caused arthritic pain so severe I became bedridden for over a week. I was told that having that particular virus at my child's stage of gestation could cause birth defects (human parvovirus B19/Fifth disease).  I was also given two high powered injections for nausea in the emergency room and took a daily medication (one that is no longer used during pregnancy) to alleviate the constant sickness.

I was convinced that my unborn child had been harmed by all I'd suffered.

You can imagine the desperation and grief of my prayers as I cried out to the Lord. In response He provided a poem, a miraculous provision in those pre-internet days to a person who never sought out or read poetry if she could help it. But this one cropped up in a daily devotional I was reading at the time, and I copied it onto a piece of notebook paper and taped it to my refrigerator. I read it daily during the remainder of my pregnancy, and it kept it's place of honor, center front on the frig, for years after until it was yellowed and stained with age.

Based on Jeremiah 29:11, Freda Hanbury Allen's poem "My Plans for Thee" provided a lifeline to my faith.  I read, reread, claimed, prayed, and memorized Allen's illumination of the trust in God that brings peace of mind and heart. I clung to these words hour by hour through dark nights of sickness and fear for myself and my unborn child.

In the fifth month of my pregnancy I walked into my Sunday School classroom and though no students had yet arrived, there waiting for me was an acquaintance whom I liked but had kept a polite distance from because she was a little "out there" in her faith. I remember that she once gave a spontaneous rendition of a praise song in the middle of a Bible Study, much to the embarrassed surprise of a group of ladies whose routine weekly meeting was stirred to unexpected alertness by  her exuberance. 

"I want to pray for you and your baby," she said, and with no further explanation she placed her hands on my modest baby bump and prayed for healing for my child. And like Elizabeth, who felt her baby leap in the presence of the mother of our Lord, my child leapt within my womb, and I felt the warmth of the Holy Spirit flood me.  Four months later, our healthy baby girl was born.

Fast forward 35 years, to a time when I am in my eleventh year of taking care of my mother, who has Alzheimer's. With such a history of faith building events in my life, one would think that nowadays I ought to be able to calmly trust the Lord for my present as a caregiver and for a future that seems uncertain.  However, I'm ashamed to say I do still struggle with trusting God when my circumstances are difficult.

But, yesterday afternoon our daughter, Melinda, paid a visit accompanied by her two beautiful sons, ages 3 and 7.  Melinda will give birth to our third grandson next month, and as I hugged her goodbye I remembered my pregnancy with her. As I pulled her close, I realized I was holding in my arms tangible proof of the certainty of God's ability to bring beauty from the ashes of suffering and fear.

We serve a God worthy of our full trust. If you are undergoing a difficult or dark time as a caregiver I hope this poem will encourage your heart as it has mine through the years.

***

My Plans for Thee
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

  - Jeremiah 29:11

        The love of God a perfect plan
        Is planning now for thee;
        It holds "a future and a hope,"
        Which yet thou canst not see.

        Though for a season, in the dark,
        He asks thy perfect trust,
        E'en that thou in surrender "lay
        Thy treasure in the dust,"

        Yet He is planning all the while;
        Unerringly He guides
        The life of him who holds His will
        More dear than all besides.

        Trust were not trust if thou could'st see
        The ending of the way;
        Nor could'st thou learn His songs by night,
        Were life one radiant day.

        Amid the shadows here He works
        The plan designed above:
        "A future and, a hope" for thee,
        In His exceeding love.

        "A future" - of abiding fruit,
        With loving kindness crowned;
        "A hope" - which shall thine own transcend,
        As Heaven the earth around.

        Though veiled as yet, one day thine eyes
        Shall see His plan unfold,
        And clouds that darkened once the path
        Shall shine with Heaven's gold.

        Enriched to all eternity
        The steadfast soul shall stand,
        That, "unoffended," trusted Him
        Who all life's pathway planned.

- Freda Hanbury Allen.

Difficult Subject

My husband and I attended an Alzheimer's information forum a few weeks ago.  It is always good to gather with other caregivers, share stories, and receive guidance from professionals who remind us that Alzheimer's disease impacts behavior and personality. An Alzheimer patient's aberrant behaviors aren't the result of negative personality traits, but have their basis in the plaques and tangles in a mind that has been compromised by disease.

This fact--that brain damage is to blame for bad behavior--often spurs us as caregivers to feel we should be able to ignore patterns of responding that, if they originated from someone whose mind is whole, would be labeled evil, hurtful, sinful, or even criminal.

It's a fine line to walk. As a caregiver, should I ignore my mother's crotchety and critical words?  Yes, of course! She doesn't understand where she is or why I am being so pushy in my insistence that she undergo uncomfortable (and in her mind unnecessary) procedures such as bathing.  Mom doesn't perceive the world accurately, and I ought to be able to respond with love and empathy and not with childish hurt feelings when she is rude.

But at the forum there was a daughter who, with tears in her eyes, told of her Alzheimer dad's groping and fondling her every time she comes near to him.  In other contexts, this behavior would be viewed as appalling, and the victim would be protected (if she had courage to file a complaint, that is).  But because her father has Alzheimer's, the suggestions given this poor woman were to keep his hands busy, perhaps with Duplo blocks or clay.  No one mentioned that perhaps she should be excused from caregiving duties because of the devastating emotional fallout of coping with the degradation and humiliation that enduring such behaviors from a parent brings. No one suggested that she be protected, or brainstormed paths of escape from this appalling situation.  This woman was hurting, and with embarrassed giggles and a few worthless suggestions, we hurried on to the next topic, acting as though this sort of thing is the norm and that caregivers shouldn't make a big deal of it.  We let her down, and I only hope she reads these words and is able to receive the help she needs.

Alzheimer patients have rights and should not be punished for their negative conduct, but caregivers shouldn't have to deal with aberrant behaviors that can cause emotional or physical damage. The harm a caregiver suffers at the hands of a patient should not be excused simply because the patient is not in his or her right mind. If we are stabbed, we will bleed, and our bodies will suffer harm whether the one holding the knife is mentally compromised or not. Likewise, the emotional devastation of abuse should not be ignored no matter the mental state of the abuser.

It is hard to know where to draw the line. The daughter suffering sexual abuse at the hands of her dementia-afflicted dad is a clear-cut situation; she should be relieved of caregiving duties to him and protected from further harm. But what of verbal abuse? Alzheimer patients are often very intelligent and insightful; my mother knows just what to say to upset me most. Sometimes she maligns me so constantly and skillfully that I emerge from her room with tears running down my face--and this is after eleven years of caregiving.

There is no easy answer. As Christians we know that we are to bear with one another in love (Ephesians 4:2), and not to repay wrong for wrong (1 Peter 3:9). We know that suffering produces patience (Romans 5:3), and that workers are to submit to their masters (1 Peter 2:18).  And so when the abuse is not physical, I think most times it is safe to say that we ought to commit ourselves to our faithful creator and continue to do good (1 Peter 4:19).

But when one is undergoing physical or sexual abuse...well, this just differs substantially from my experience of putting up with Mama's hurtful words. Sexual abuse, no matter the mental state of the perpetrator, has long-lasting and heart-breaking ill effects, regardless of the age or relationship of the victim to the abuser.

I am praying now for that woman who asked for help at that forum I attended, help that so far as I know, she did not receive. I pray she finds escape from the oppression she's endured, and healing for the emotional damage she has sustained.

***

The best online hope of help I can suggest for anyone suffering abuse at the hands of a dementia patient is to call the Alz.org helpline at 1.800.272.3900. Prepare for the call by writing out a list of specific questions, and do not apologize, act embarrassed, or laugh as though it is no big deal. You may have to seek counsel from several sources before you find the help you need. Seek help, pray, and get others to pray for you. Find someone who understands the devastating impact of the difficulties you are suffering, and who will advocate for you. I pray a way out of the oppression of this sort of abuse for anyone who is suffering in this way.  

***The righteous cry out, and the Lord hears them;
    he delivers them from all their troubles.
The Lord is close to the brokenhearted
    and saves those who are crushed in spirit.
Psalm 34:17-18

Only One

We all remember the story Jesus told of the Good Shepherd who was willing to leave 99 sheep safe in the fold while He searched for the one who was missing. I’ve always felt kinship to that story because most of my life’s ministries have been to just one person at a time.

My children are 7 years apart in age so that I’ve joked that I essentially raised two “onlys.”   The most effective portion of my teaching career consisted of individualized interventions for troubled readers. And when I’ve taught Sunday school over the years – well, let’s just say I’ve never drawn a crowd. Many Sundays I’ve presented my carefully prepared lessons to just one or two students. 

My books are not best sellers; they average just one sale a week at Amazon. And the past eleven years I’ve taken care of just one little old lady, my mother, who has Alzheimer’s disease. 

Through this lifetime of service to “ones,” the Lord has taught me that He views success very differently than we do.  We look at quarterly gains, area covered, and dollars earned, and if the numbers are pleasing we call ourselves successful.  But in God’s economy, individual lives are of inestimable worth.  

My friend, Abby, over at Little Birdie Blessings, recently posted a link to this blog on her Facebook page (Abby’s blog is beautiful and encouraging, check it out). The quote she shared reached thousands of people, and one lady—just one—said that my blog had been helpful to her on that day. I just smiled because I realized that this woman is so precious to the Lord that it was not too much for Him to spur me to write the helpful blog post and then touch Abby’s willing heart to share it, all so that this one woman who is so precious to our Lord could be helped. 

God doesn’t count success as we do.  The very young and the very old are neglected members of our society; these vulnerable lives are so easily overlooked. They can’t take care of themselves and so God calls us to be vessels for His tender care. When we offer our hands and hearts to the Lord in service to just one person in need, we are pleasing to Him. 

Caregiving and parenting are difficult assignments and often frustrating, but we can put to rest any thought that we aren’t accomplishing very much in this world when the needs of just one person keep us busy. In God’s eyes, that one individual is of great worth, and we are following in the footsteps of the Good Shepherd when we spend ourselves on behalf of just one.

Find a Little Respite

Caregivers need respite, and by that I mean time away from the responsibilities of caregiving. My favorite form of getting away from it all is not very exciting, but is rejuvenating for me; I putter around our farm taking photos as I go. I find that the beauty of God's creation refreshes my spirit.

I urge each of you to find your own respite and invite you to share a bit of mine over at my other blog today: At Home in Karola, Kansas. You'll find my other form of respite there too, because the imaginary town of Karola is the setting of my novel, The Children Are Tender.  I had so much fun writing this book! The work was all-encompassing so that during the hours I spent creating the characters of Karola, I was given a vacation from the stresses of my caregiving responsibilities.

These two activities--writing and spending time outdoors, have saved my sanity during my eleven years of caregiving. I believe that creative endeavors such as writing, quilting, painting, knitting and crocheting, etc. are wonderful respite activities, and I also think that fresh air and exercise are especially important to the well being of folks who are enduring stress. 

Here's a prayer that caregivers who read this post are able to find their own happy combination of creative activities plus time spent appreciating the beauty of nature so that caregiving responsibilities don't overwhelm. 

Father, Forgive Them

Anger isn't a constant state for my Alzheimer's mom; much, even most of the time she is pleasant and quiet. But during her restless times, most often in the late afternoons, she lashes out.

In her anger she feels I am not meeting her needs properly, and she becomes vindictive, trying to think of things she can do or say that will upset me. The anger itself becomes a separate entity that can't be reasoned with. It is no good to point out her pleasant surroundings and the large chart on her door that lists her schedule. It doesn't help to tell her that I'm in her room a minimum of eight times a day, seeing that her needs are met. In these moods she doesn't want explanations, she wants a target. She can't explain why she is so viciously angry, but she is very good at voicing the anger. 

I'm just heart weary.  She surprised me last night by mocking the way I laughed at some little joke my husband made about our silly but sweet yellow lab as we walked with Mom around the driveway, and for some reason this particularly hurt my feelings. I've sometimes felt self-conscious about the way I laugh.  Mom followed her scorn of my laughter with these words:  "My knee hurts, does that make you happy Linda? You like seeing me suffer don't you? Someday you will have to pay for this, the Lord is taking notes of this."

I replied, "Ohhh Mama, you'd better hope He isn't." 

But you know I've wondered about this. In someone who doesn't have Alzheimer's, Mom's behavior would be labeled "sin." Isn't she getting herself into deep trouble with the Lord?

When I brought this issue before the Lord, I instantly thought of Jesus' words regarding the people who tortured and killed him: "Father, forgive them, they do not know what they are doing" (Luke 23:34).

Well...if ever there was someone who doesn't know what she is doing, I'm sure it would be a 91 year old woman who's had Alzheimer's disease for eleven years.  I felt so betrayed when Mom, angered because I hadn't answered her phone call requesting saltines to go with her coke, called 911 and reported elder abuse...but how much deeper was the suffering that the betrayal by His own people inflicted upon Jesus.

And then I remembered another verse that says whatever we bind on earth is bound in Heaven (Matthew 18:18).

If I refuse to forgive Mom, I hurt not only myself, I hurt her by deepening her sin before the Lord.  If I refuse to pray, with our Savior, "Lord forgive her, she doesn't know what she is doing," then I make it more likely that Mom will remain bound by her own sin even as I allow the crippling effects of unforgiveness to take root in my own life.

"But Lord," I prayed, "She has broken my heart."

In response this thought came: "No, she has not. Your heart is safe in My hands."

Unforgiveness binds us to the ones who hurt us; in a way, it puts us at their mercy. The Bible instructs us to respond to bad treatment with love, and to pray for the ones who persecute us.

These are not happy lessons to learn at the hands of the woman who once adored me and would have been willing to give her own life for mine. The sense of betrayal runs deep. But I'm praying for grace to forgive my mother even as God has forgiven me for my many sins, and to release her from accountability for the wrongs she's dealt me.  If you've also been treated unjustly, perhaps you'd like to pray with me:

Father, we release our loved ones from accountability for the sins they've committed against us. We know You love us and take action against those who hurt us, and so we release them from our blame and any divine rule that would require Your vindication on our behalf. We lift these, our beloved enemies, to You, and we pray: Father, forgive them, they don't understand what they are doing. In Jesus' name, amen.

Comforting Scripture for Caregivers:  

But I said, “I have labored in vain; I have spent my strength for nothing at all. Yet what is due me is in the Lord’s hand, and my reward is with my God.” 

 Isaiah 49:4

...God is the strength of my heart and my portion forever.

Psalm 73:26

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.

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

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.  

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.