Wednesday, January 19, 2011


When a loved one is stricken with Alzheimer's disease, there is almost always an accompanying sense of guilt-producing shame on the part of the caregiver. In response to emerging aberrant behaviors in one who was formerly competent and admirable, the caregiver's shame creates a desire to protect the loved one from being unfairly judged by others. Most caregivers attempt to "cover" for their loved ones who have dementia, but some take it so far as to attempt to avoid an official diagnosis. This can't go on indefinitely, because untreated Alzheimer's disease tends to progress in ways that become hard to hide.

Another sad secret is that when dementia strikes, the patient loses the ability to hide sinful behaviors. These tend to emerge and, depending on the individual and the specific nature of the negative behavior, cause varying degrees of difficulty. Since there are no sin-free people, this is a universal problem, and it is one that has caused sorrow for me; not because I was previously unaware of my mother's sins, but because now other people can see them clearly as well.

I love my mother fiercely and protectively. I remember her as she was pre-dementia, when she was my closest confident, my number one admirer, and the person who could be depended upon to pray for me any hour of the day or night. When I look in the mirror I am blessed to see a strong resemblance to my mother. I love her so much that when she is gone from me, the ways that I resemble her physically will be a comfort to me; a way that she will remain with me for all of my life. I am determinedly glad, too, for the ways I resemble her spiritually.

However, Mom has become, in a word, crotchety. She peers at her world from beneath a ferocious frown that I know to have been borne of suffering, but is interpreted by others as anger. Just recently a young nurse responded negatively when Mother barked out a cranky sounding remark and then, in a failed attempt at humor, uttered an expletive when the nurse helped her to the scales and Mom was told how much she weighed. The girl was shocked, and acted thoroughly affronted. I just wanted to pull out a home movie of my mother from 25 years ago and force this young woman to watch it through and to admit that my mother was admirable then, and behind the facade of dementia and old age, she is admirable still.

And Lord preserve me from people who would corner me to tell me of the latest strange or amusing thing my mother has done. I am aware of my mother's oddities. I wish that other people who interact with Mom would understand that, during the rare times I am not the front-line recipient of Mom's dementia related behaviors, I can be kept on a need-to-know basis!

I guard my mother carefully and sometimes I keep her separated from social interactions in order to protect her. I try so hard to protect her from the judgments of other people. Sometimes I have fear that other people misinterpret my commitment to keeping Mom apart.

During prayer time one morning I felt the Lord say to me, "You have false guilt concerning your mother. There is a sense of shame I would have you release to me."

This morning I understand that my commitment to protect my mother is praiseworthy, and not shameful. My prayer for myself and for caregivers who read these words is that we are able to pray for our care recipients, love them, and then to leave in God's hands how they are perceived by others.


  1. I was with a dear friend at her mother's home when the Mom was beginning to enter dementia. The mother did something that was inappropriate but not over the top.
    My friend was so embarrassed. I felt badly that she had this reaction.
    This post reminded me of that experience.

  2. Other than my husband's pre-sanctification swearing, he has not shamed himself or embarrassed me. But I read that this is normal even for Christians with dementias. Apparently that part of the brain that regulates social behavior is going.

  3. I just stumbled across your blog today, and I thank God that I did! Both of my paternal grandparents were in the end stages of Alzheimer's when they died only months apart in 2009. My father, my mother, myself, and one of my brothers were their primary caregivers until the last couple of months.
    I had always looked up to them both so much, and when they started acting out in weird and sinful ways, I was confused and worried even for their salvation at times. It wasn't until after their deaths that I realized that regardless of what they did, if they were in Christ, all was forgiven. It was only there at the cross that I found peace about them.
    I couldn't help but cry as I read your post, and remembered how often I wanted to tell medical staff how truly wonderful they were before all this.
    But what a blessing to know that we are all so sinful, even if no one but God ever sees it, and in Christ all sins have been forgiven! Thank you again, love in Christ!

  4. I was so touched by your post. How sad for that nurse that as a professional she had not learned to love and care for others. Is that not their job? But, for some a job is a job... for others it is a gift they give others. She is on the losing end of that.

  5. Hi Linda.....
    I love this post.... and I too have a feeling of camaraderie with you as a fellow Alzheimer's caregiver.

    David's in the late mid stage of this awful disease. He always had the best of manners, and now he thinks nothing of burping when we're at a really doesn't bother me, and for that I'm grateful. But... when anyone looks at him with raised eyebrows..... I want to tell them off, but I don't.

    I love the apartment you've provided for your mother, and the beautiful window it's wonderful.....
    God IS good!