Monday, September 21, 2015

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.



Sunday, September 13, 2015

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