Many years ago, on a Thursday in mid-November, my family gathered to celebrate Thanksgiving. Platters of ham, turkey, cranberries, stuffing and yams were exchanged from dish to fork to plate while prayers, stories, songs, laughter and conversation filled the room. I was so happy, almost giddy seeing cousins, aunts, uncles, and family friends. But something didn’t feel right and caught my immediate attention. Like a newly discovered canvas of "solitude on display," I found myself drawn to a scene in another room. Alone, with her back to the table, staring blankly out the window, sat Lucille.
Lucille lived on a fern filled lot four houses away from my grandparent’s house in a small rural town. She was my grandmother’s best friend, and always attended our family events. One day, I remember my paternal grandmother telling me that she and my grandfather were handling Lucille’s affairs, because her memory was so bad that she wasn’t able to balance her own checkbook. I noticed that the once soft spoken and bright Lucille was becoming withdrawn, tongue-tied and quiet. As the years went by, Lucille got worse, and eventually died. It was clear to see, both then and now that my grandparents not only saw to Lucille's affairs, but by always giving of themselves, showed Lucille that she was deeply loved. Lucille was the first person I ever knew who had dementia followed by my maternal grandmother, and most recently, my mother.
Knowledge of my mother’s dementia, was not gradual to me, but sudden. (I saw mom in March and she appeared to be fine, then in July there was no short -term memory.) Other than maybe a cold, or dental surgery, I have no recollection whatsoever in all of my 55 years of ever seeing my mother ill, tired, or bed-ridden. So, seeing mom with fatigue, and cognitive impairment, along with two other serious, life-threatening illnesses was beyond shocking to me. I literally felt as if the rug had been pulled out from under my feet. I was heartbroken, and felt so sorry for her, and (as selfish as this may seem) I also felt sorry for me. Everything was changing, and it was clear that a part of our mother-daughter relationship (the intimate and supportive relationship we had always known), without warning was ending. However, little did I know, that a deeper, and more meaningful connection was about to emerge, and all I had to do was to listen without judgment to the leanings of my heart to know the love we always shared, although hidden among the confusion of physical limitations and forgetting, would always be there.
Was she scared? Was she even aware of what was going on? Did she want to talk about it? What could I do to make this easier for her? How could I communicate my love for her when (in time), feelings would no longer be articulated into words? These were all questions I had inside my head. Seeing her every day, I might have noticed more. But I lived miles away when she started to decline, and only saw her a few times a year. What I wasn’t aware of, and will talk about later, is that there is a gift that our friends and loved ones with dementia give us every moment we interact with them. We just have to know how to recognize it, and embrace it. We don’t need to be afraid, or heart broken. We just need to be able to surrender to the moment and meet them halfway, somewhere between “what was,” and “what is.” New and improved relationships can form with people that we have known for years by building bridges rather than walls. By taking the path of inclusion, with a willingness to be led, rather than taking the path of exclusion, isolation, control, anger and regret.
Building bridges rather than walls can be easier said than done, but anything is possible with a little education and effort. Finding out that someone has a serious illness, or has lost a loved one can cause retreating behaviors rather than engagement opportunities. (Some folks would rather run for the hills, than to explore their own feelings of life and death that come up when they reach out to someone needing support.) I understand. It is hard to think of what to say to someone who is suffering. But what is lost is an incredible opportunity of letting the experience guide you on your own spiritual healing journey. We are each other’s teachers. And helping other people, is an incredible way to learn about life’s mysteries and healing miracles that can and do happen, when we look at possibilities rather than limitations.
It is important to be yourself and to connect just for the sake of connecting. Some of my mother’s closest friends and family members have stopped calling her. They may think, “Why?” “Will she even remember that I called?” However, what some people don’t realize, is that one way to help a person with dementia is to socially engage with them through conversation. Mom loves socializing with people, and I make it a point to bring her out for social activities at least 3 times a week, or more. Socializing is very healthy for the brain. So, if we can dispel our fears of reaching out, and just pick up the phone, or knock on the door we can do a lot to help our friends with dementia. Don’t mean to be too blunt here but I’ll say it anyway, “They are not dead, yet!!” “They are human beings having short term memory recall difficulties!” You can reach out, and know that you made a difference, because you HAVE! Let them know you love them and still care for them even if they forget what you said. Love them anyway!
What has amazed me in walking the path of dementia with my mother, is that we are truly in sync with one another, living in the present moment together. I call this, “The Gift of Presence.” It is the ability to sit with someone, without judgment, expectation or anticipation, and to feel their heart on a spiritual level, surrounding them with sacred unconditional love. (Similar to what you feel in your heart when you hold a new-born baby.) I can feel what mom is thinking before she says it and ironically, she does the same with me. Each day we sit on the deck under the trees in silence. I wait until she makes an observation about nature (usually the trees), and then ask her questions about what she is noticing about the tree, etc. Then, at times (if she wants to sit and meditate) we stay present with one another in the silence. It is very much, non-verbal communication with a focus not so much on what is being said, but on the exchange that happens between the lines by just connecting from a place of love. Mom can speak now, but by using this method of communication, I believe that when the words are gone, the communication will continue, and does not have to end. Communication experts tell us that over 50% of all communication is non-verbal so by using the gift of presence, it is possible to keep the lines of communication open forever.
I’m learning more and more about dementia every day, constantly reading books, talking to professionals, etc. My favorite book on dementia is called. “Contented Dementia.” The reason I like this book so much is because it gives communication insights that honor the person experiencing dementia letting them know they are “being heard, ”even if what they are saying is illogical or unreasonable. This can avoid and disarm agitation, etc., which can lead to a peaceful existence, creating lasting memories, and a better quality of life.
Copyright 2014 Caregivers Get Fit! Mama Nicey All Rights ReservedThe information in this blog is information. It is not meant to be a replacement for getting medical advice from your own health professional regarding your own individual health challenge or condition. Dr. Denise will not diagnose, treat, or give direct personal consultations/advice to you on this blog for any medical condition, but will give general examples, and scientific research on many different health topics. How you decide to use the information is between you and your own medical/ health professional.