How to Hear and Honor Connections
with a Person who has Dementia
by Nancy Pearce

ISBN-13: 978-0-9788299-0-2
ISBN-10: 0-9788299-0-5
LCCN: 2006909855 
Binding: Paperback
Pages: 320
Size: 5.50 x 8.25
Price: $19.95
Carton Quantity: 30

Now in its second printing!

Featured in Library Journal's "Best Consumer Health Books of 2007"

Excerpt from Chapter 2 - Intend a Connection:

Gremlins are those persistent little thoughts that throw the wrench into the works and freeze everything up. They are the negative inner messages that stop you from doing anything you are trying to do. If you are like most people, you come fully equipped with all the shoulds, oughts and insecurities that your personal psychology and society has to offer. And gremlins remind you of them day and night. You want to make a connection with someone? It just will not happen as long as you pay attention to their messages. Your gremlin’s job is to distract you from and to interfere with that connection.

I guarantee that it will not take long to identify your own gremlins as you attempt connections with persons who have dementia. The disease process does not destroy a person’s ability to feel all positive and negative emotions. Interactions tend to be very real and direct―at times, bluntly honest. Your sense of humor and a little humility will help you develop grace and ease in dealing with whichever gremlins surface.

Give Your Gremlin A Coffee Break
Gloria

Gloria was a client who was able to live in her own home long after the onset of dementia. She had an extraordinary family: four children took turns providing continual supervision and care. My responsibility and pleasure was to regularly spend time with Gloria and encourage her life review whenever she was able to participate. On one particular visit, I arrived, my head spinning with all that I still needed to do that day. Not only had I been running to keep appointments, but there were four other people still on the schedule, paperwork I did not even want to think about, and I had just been notified of a friend’s personal crisis. However, I wanted and intended to spend focused time with Gloria. I consciously worked hard at letting go of all the gremlin messages about what else I should be doing so I could be fully present with her. I remember thinking I had done a pretty good job of dismissing the negative and focusing on my intention. Apparently not. About ten minutes into our visit, Gloria pulled my face toward her with both hands on my cheeks, stared deeply into my eyes as though aiming for my heart, and said with a hauntingly painful plea, “MEeee!” Gloria was bringing my attention back to her, to where it belonged in that moment. My mind was somewhere else and she knew it.

A person with dementia tends to have very strong antennae; she can feel when we are distracted or are not fully present for a connection. She will sense when your gremlins are dividing your attention, quite possibly even though you are not aware of it. If you pay attention, you will see the signs of your pre-occupation in the person’s reactions. It may be as easy to understand as Gloria’s reaction or it may be nonverbal in an irritated look, fidgeting, or pushing your hand away. At minimum, a connection between the two of you will not happen in those moments.

Gremlins have a variety of messages that botch things up. I will talk about some of the more common ones, but first I would like to reassure you. Some of us have very strong relationships with our gremlins, so I will not suggest that you ban them from your life. I only suggest that you give your gremlin a little coffee break during the time you want to spend in connection with the person who has dementia―just for that time. It will allow you to be fully, really, and honestly present in that moment and to bring your full attention to connecting. Do not worry. Your gremlins will eagerly come back when you are done. So let’s talk about some of those messages.

Oh That Poor, Unfortunate Soul

One of the fastest routes to making no connection at all is pity. As Caroline Myss so aptly points out in her Essential Guide for Healers, you cannot be effective if you can only look at a person and see the tragedy, the horror, the sadness. To pity someone with dementia is to see him only through his illness, his diagnosis. It places a distance between the two of you with you on a better-than-the-other level. Pity’s only function is to keep you in a sad place and the person with dementia beyond reach. A harmonious connection requires the two of you to be on the same playing field. Each of you is a person who has something valuable to offer in a relationship and each of you will be better for having connected with the other.

Pity also promotes despair—hopelessness about ever escaping the condition. On the other hand, seeing a person with dementia as someone who is going through an experience that demands some difficult adjustments, empowers both of you and provides a direction. There are tools to learn and skills to develop that will help both of you as you adjust to changes as they occur. This is doable. It promotes strength and hope.

MARY

I did not think that pity was a gremlin I needed to work on, since such a large focus of mine as a medical social worker has been to empower my clients. Then Mary came into my life to teach me more. I visited Mary in her nursing facility every few weeks over a period of five months. Her norm was to be in a searching mode—something was not quite right. She had difficulty finding words to express herself and she experienced many moments of frustration and anxiety that were not easily shifted. I spent my time with her pushing her in her wheel chair around the facility to assist in her search, all the while talking with her in soothing tones. She would occasionally dip into a very painful past and dart away with an abrupt shift in topic or direction for our tour. The visits always ended with my validating her connection with her daughter—“the only person that ever really loved me,” she would say. Our time together helped calm her for a few hours, sometimes for a few days. Unfortunately, she would always return to that anxious, searching place.

During one visit, shortly before she died, Mary had an amazingly clear day. She talked with only slight word-finding difficulty about multiple tragedies throughout her life. Her story gripped me. She revealed her history of abuse, of people who had abandoned her, and of her feelings of inadequacy and failure. I became almost overwhelmed with sadness, feeling sorry for this poor, unfortunate soul who had such a difficult path in life. Tears began to well up in my eyes, I must admit.

Then I noticed that Mary was speaking in a matter-of-fact way. She had no tears, no particular emotions associated with such traumatic events and no detachment either. All appeared to be integrated and she was at peace with everything. Her serenity made me wonder about my welling-up sadness even while she so clearly communicated through a position of strength. I asked her how was she able to adjust so beautifully to all the things that had happened to her in this lifetime. She straightened up her frail, 86-year-old frame and said, “Well, honey, if you can’t adjust in this world, you’re just s__t out of luck!” I laughed and immediately felt lighter and stronger. I let go of the pity that had put me in tears and identified with Mary’s strength and humor.

Certainly, it is valuable to empathize with the person with dementia and to put yourself in her shoes so that you can understand and have compassion for what she is experiencing. Then, you, as a person, are identifying with her as a person. When you pity, you are identifying with a myriad of symptoms and/or events. Empathy identifies with the person; pity identifies with the symptoms. Empathy places you in a level, person-to-person position, so you can work together in moments of healing connection and move forward.