The”D” Word We Prefer to Deny



During my vacation, along with walking in the California sunshine, taking photos of flowers, and relaxing with my children and grandchildren, I read several books. One of them was Thoughtful Dementia Care: Understanding the Dementia Experience by Jennifer Ghent-Fuller.

You might be wondering why I would read such a book while on vacation. Wasn’t it depressing? Who wants to think about dementia at any time? Not many of us.  It’s not my favorite topic of conversation. Probably not yours, either. But I hope you will keep on reading.

I chose to read this book not because I am greatly worried about my mental decline (although I do have some short-term memory loss) but because I want to understand the challenges that some of my friends and family members are going through. I want to understand the process of dementia so that I can be helpful to them.

Jennifer Ghent-Fuller points out that most books about dementia are written with the family and caregivers viewpoint in mind. That’s why she wrote hers differently. It’s written from the viewpoint of those who are experiencing dementia–people she taught, supported and cared for during 25 years of her life as a nurse.                 

This book was difficult to read. I could not read it straight through. As I began to see dementia through the eyes of those who have it, tears came to my eyes. I had to stop reading for a few hours. Why? Because I discovered that people with dementia are very emotionally sensitive.  I have not understood that fact and lacked compassion.

As Jennifer points out, understanding their experience and viewpoint can help us see beyond their behavior problems, which might be our primary focus, and act with patience and kindness instead of anger and irritation.

I’ve tended to get impatient with them, as well as with myself when I forget something.   I’m changing my attitude. I want it to match God’s attitude. He does not devalue those with a loss of brain power. From his point of view, who among us is not in some way lacking? 

We might be children learning skills or we might be seniors losing skills. Either way, God loves us. We are spiritual beings not just physical bodies. Our spirits can connect with his Spirit even when our minds cannot.


God, give me a heart that beats like yours
When friends of mine stumble in this course–

Can’t find the pathway to their door,
Can’t reason as well as they could before.

Give me patience while they are losing some skills.
May I gently help them wipe up their spills—

May I never berate them or call them cruel names;
Help me speak with kindness, remembering my frame.

Help me gladly supply what they lack—
Explain by example, never attack;

Bear with their ignorance, their slowness, their fear;
Help me act wisely and do it with cheer.

Give me grace to stay, as their minds fade away,
For I might walk in those shadows, someday.

14 thoughts on “The”D” Word We Prefer to Deny

  1. Good morning, Jane,

    The word poignant, evoking deep emotion or “deeply affecting: touching” (Merriam-Webster, n.d.), fits well for me. My closest family experiences with dementia are that of my grandmother, who had repeated “mini-strokes,” and my brother-in-law, who was diagnosed with Alzheimer’s Disease. As a young child, I was able to give unconditional love and acceptance to my grandmother.
    As a young adult, I had a more difficult time accepting some of my brother-in-law’s habits. We had an unkind exchange of words once, long before he had an official diagnosis, only bad habits, and tardiness. I apologized first as I knew I should, it was my duty to apologize for hurting him. I am after all the only picture of God some people may see. We were blessed to share many more years together as friends and family. I was even able to offer a respite spot for him and his wife when it became difficult for them to stay with others or at a hotel.
    But, poignant is a good word for the feelings of loss of 2 beautiful spirits that I pray I will encounter again in God’s presence some day. Thank you for the kind reminder to all of our need to nurture our acceptance with the help of God.

    God’s peace,
    Lee

    Reference
    Merriam-Webster. (n.d.). Word of the day: Poignant. Retrieved May 20, 2018, from https://www.merriam-webster.com/dictionary/poignant

    • Lee, thank you so much for sharing some of what you experienced with family members who suffered from dementia. My heart is touched by the grace and kindness you showed to your grandmother, your brother, and his family. I’m grateful for your wonderful example, compassionate heart, and beautiful spirit.

    • EXACTLY. AFTER SEVERAL WEEKS IN THE NURSING HOME MY SISTER WALKED OVER TO ANOTHER PATIENT, AND WITH A GLOW OF HAPPINESS AND HOPE SAID,” I JUST WANT TO TELL YOU, I’M ON MY WAY TO HEAVEN”. I REJOICED WITH HER BECAUSE I KNEW SHE WAS GIVING THE TESTIMONY SHE REALLY FELT.

  2. Christ’s compassion covers so much and yes dementia as well. As we do all we can to improve the situation, sometimes just being there in their world with love can make the greatesr difference. I remember one woman in a nursing home who was convinced she was on a cruise. At first I would gently remind her of where she was and her face would fall. Day after day she would come to breakfast with her bathing suit and sun hat. I soon realized that bringing her a
    beach coverup and talking about the ocean was the best way to start her day…

    • Thank you, Donna. Your story is priceless. True compassion is the ability to enter into someone else’s world when they can not enter into ours and love them in a way that is meaningful to them.

  3. Hi,
    I have been researching and reading on this topic too. I’ve been looking into what I can do now. The best news is that our brains are more regenerative or plastic than previously known. My book list includes ‘Genious Foods’ by Max Lugavere and Paul Grewal, MD and ‘Memory Rescue’ by Daniel Amen, MD.
    Both books provide research backed information. While you never know what the future holds we do have today we do have the blessing of information and the blessing of action. And always faith and hope. Grandma always said do what you can then let go.

    • Thanks for sharing your thoughts about dementia and book recommendations. Although I love her caring words and her knowledgeable understanding of people with dementia, I differ with Jennifer Ghent-Fuller in her perspective that there is nothing we can do about the advance of dementia. God has made our brains with a wonderful capacity to regenerate. And there are many things we can do to slow down the process of aging. John and I purposely chose to study and write.

  4. Thank you for this thoughtful meditation, Jane. I love how you lead by example. As long as we are living, we have opportunities for growth and change. It is never too late.
    Dementia is a cruel disease. It not only robs the person with it of their memories, but it takes away their family’s and friend’s ability to interact at a “normal” level. But we can always love with God’s help. As believers in Jesus, we are always learning to be more like Him. While we are here, we get to learn how to really love through the various testings we go through.
    I appreciate your vulnerability in sharing. That’s what true discipleship is about. And it’s a good reminder to pray for friends and loved ones that have to deal with this difficult disease.
    I appreciate that you didn’t run away from this difficult topic, but that you chose to look at it head on. Thanks, Jane.

    • I appreciate your comment, Sandy. It was not without a bit of fear and trembling that I addressed this topic head-on. Isn’t it always better to feel the fear and face it than to run?

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