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