Wednesday, October 14, 2015

I Thought It Was Sunday!

Dementia affects everybody, not only the person with the disease, but the people surrounding the person who is suffering. The spouse, the children, the siblings the parents, the coworkers, the community leaders and the long lost friends, to name a few.  And the suffering grows like blooming flowers out of many places, not just the neurofibrillary tangles found in diseased brain tissue. The effects are immense for many reasons, but mainly, the most prevalent reasons are because all of the categories of dementia, especially A.D.,  press our fear buttons. And the big question is: "What am I going to do if this happens to ME?"

So, people living with this fear, which most of us, (either consciously, or unconsciously) have - do what people typically do when they are faced with uncomfortable situations.  They disappear. They busy themselves with social obligations and completely ignore the one person who could benefit the most from the healthy effects of social stimulation. "She won't remember me anyway," and they never call, write or visit the person with dementia. Why? Because they don't know how to communicate with the person. So, the person suffering from the disease, without choice, becomes a social outcast.

Well, get this one nugget today:  When carrying on a conversation with someone struggling with dementia, SPEAK IN THE NOW. (Ie: What are you doing NOW?  What are you thinking, NOW? What are you looking at, NOW?)  NEVER say, "What did you do today?"  NEVER!! Because they can't remember what they did, and they feel terrible about not being able to remember.  They really do. 

Lori's mother has had dementia for 2 years, and still, everyday looks at the mail searching for letters.  And the sad part is that Lori's mother loves people, and loves to interact - but can't use the computer anymore. She has lost the ability to use her email and can barely use her cellphone anymore.  So, people do not make the extra effort, (other than her children who all get together and Skype her a few times a month.) And if people only knew that Skype alone is a great way to communicate - they would be able to have lasting communication with their friend suffering from dementia long before they would ever lose their ability to speak. Sixty percent of communication is non-verbal and visual - so Skype is a great way to stay engaged.

 Lori's mother has vascular dementia and could even live well into her nineties.  But some people think that dementia is a death verdict and already treat the person suffering from dementia as if they are already dead.  They speak over them to their caregivers, and do not acknowledge their fears. Lori's mother insisted on watching the Glen Campbell special on A.D.  And when Lori asked her questions about how she felt watching the special, her reply was, "I'm scared, really scared."  Lori said, "What are you scared about, mom?"  "I'm scared that I may have that." "Lori responded, "Well, you are very forgetful sometimes, but your doctor doesn't think you have what he (G.C.) has, but another type of forgetfulness caused by your heart issues, and that type of forgetfulness has a very long life span. And, anyway - when you forget things, I'm here to help you remember. And when I forget things, you help me to remember, so we are both in this forgetfulness together for the long haul. Is that okay with you, mom?" Then, Lori's mother busted out laughing. "So mom, what do you think about changing the channel and watching a cooking show?"  Her mother said, "No, I want to see this until the end."

Lori woke up, yesterday and her mother jumped, (literally jumped) out of bed. "Mom, what is your hurry?  Did you miss the bus?"  Her mother started laughing.  "Lori, we need to get ready for church!" It was Tuesday yesterday.  "Oh, mom it is Tuesday and there is no church today." Lori's mom looked sad. "I thought it was Sunday."  "That's okay Mom - I do the same thing. Sometimes the days run into each other, and when that happens, week days can feel like a weekends, right?"  That was the end of it. There was no more talk about church.

Then at 9:15AM Weds. ( today), Lori knocked on her mother's door, and out walks Lori's mother decked out to the nines with her hair done, her make-up on, her best dress on, shoes on, carrying her purse.  "Where are you going all dressed up, mom?"  "I want to go to church," said Lori's mother.  Since Lori was driving right past a church during her errands, she said, "Mom we can go to church right after breakfast, okay?"  So 20 mins later, Lori and her mother were in the car driving to church on a Weds., morning one town away.

 Lori brought her mother to a church, not the same church that they attend on Sunday, and Lori's mother smiled and smiled when they walked in. Lori's mother whispered, "We can sit here."   So, the two women, whispering to each-other in an empty church,  sat in the second row pew of a very old church. And then in the silence, Lori's mother closed her eyes. Lori said, "What caused you to want to go to church today and yesterday. Is there a special reason?" Lori's mother, with her eyes closed, said - "God is here, God is here." And with reverence, Lori and her mother prayed. "Who shall we pray for, mother?" "Everyone,  pray for everyone, "said Lori's mom.  So, Lori and her mother prayed for people they know, strangers, and the entire world.  Then Lori and her mother sat in silence for 30 mins., Lori's mother wanted to stay, but Lori told her they would return every Wednesday.  Lori's mother thanked her, saying, "That was nice. That was really nice."
Positive Communication methods for people living with dementia:  We recommend seminars by Teepa Snow,M.S., OTR/L.FAOTA, Naomi Feil, MSW,, and her books, all of them. And the life changing, ground breaking books, "Contented Dementia," by Dr. Oliver James, "The Mindful Caregiver," by Nancy L. Kriseman, and "Deeper Into The Soul," by Nader Robert Shabahangi, Ph.D, and Bogna Szymkiewicz, Ph.D

Copyright 2015 Caregivers Get Fit! Mama  Nicey

The 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.

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