Saturday, October 4, 2014

The Lady With The Purple Hat

It must have been 2AM. Lori was up late, working on her computer in a dimly lit kitchen accompanied by the “humming” steel and glass percussion of a water logged dishwasher.  Peripheral sounds of glasses and plates bounced off the walls. Creaky doors, a mumbling voice, and rhythmic shuffling of slippers  danced among the shadows, and there,  silhouetted against the flashing digital green  timer, stood an elderly woman in a nightgown with disheveled hair, and a toothless grin.  “Mom, is that you?  How are things going for you?” Lori said.  Lori’s mother was rolling her eyes, pursing her lips and shaking her head, getting ready to tell her a huge secret at 2AM. With one hand cupped to Lori’s right ear, whispering and leaning into her, Lori’s mother carefully looked over both shoulders as if being watched by the CIA, not wanting anyone else to hear. “She wants me to stay in my room because she is afraid I will wander around late at night.” Whew, “ (An animated toothless sigh)” Can you believe it?” Lori’s mother was rolling her eyes as if someone had insulted her.  Lori said, “Who is she?” Her mother said, “The lady over there (motioning with her hand, pointing and gyrating her torso in a choreographed, exaggerated fashion)”She’s in my room, Lori”, her mother said. “ The lady with the purple hat.” 

 “Oh,” Lori said with assurance and concern. “Is the lady with the purple hat mean or nice?” Lori’s mother said, “She isn’t mean, but she is very ugly and quite annoying.” Lori said, “Well, I guess I better talk to her then.  Would that be okay with you, Mom if I talked to her?” “Oh yeah, I wish you would.  Then I could maybe get some sleep around here.” Lori’s mother was tired, and obviously had a bad dream. “Okay Mom, (after giving her mother a tall, cool glass of water), “Would you like me to tuck you in?” “That would be fine, “said Lori’s   mom. So, Lori brought her mother back to her room and tucked her in. “Hey, (with a very surprised look on her face as she climbed back into bed), “ I don’t see Miss Annoyance here in the room now,” Lori’s mother  said. “Well, “ Lori said, “Maybe she decided to go home to her family, after all it is a little too late to be working now.”  “I don’t think she will bother you again,” And then, pulling up the comforter,  Lori’s mother rested her head on her favorite pillow, taking in a deep sigh of relief and relaxed her wrinkled face with a peaceful smile.  Lori hugged her mother, kissing the top of her head as she slumbered off to sleep.  In the morning, Lori’s mother didn’t say a word about the lady with the purple hat, and never brought it up to Lori again. 

  Interesting interaction above, and one that comes from a place of receiving rather than leading. To receive cues from people needing support means to listen and respond in ways that honor their place of “being” in that particular moment, at that particular time, giving presence to their reality, not yours. The intention is to create a warm, and loving space of acceptance, void of judgment or expectation.  People suffering from cognitive impairment are usually scared, and much more aware of their cognitive deficits, and of other people’s reaction to their challenges,   than anyone would ever expect. This awareness that they silently carry with them needs to be recognized. If it is not honored, recognized or appreciated, it can cause their self-esteem to plunge into the gutter, causing a decline in their overall quality of life. The last thing, (in my opinion), that people suffering from dementia need are caregivers   who are controlling and unwilling to be led.

If we look at the interaction above and replace Lori’s loving and honoring interaction with her mother with a controlling character in Lori’s place, the interaction could be cold and accusatory. Questions such as: “What are you doing up at 2AM?  Go back to bed! Don’t you know that you are not supposed to be getting up at 2AM? What do you mean there is a lady with a purple hat in your room?  You have dementia, and are seeing things. No one is in your room! Go back to bed now and forget this non-sense!” Now, this may be a huge exaggeration of how some people would interact.  But the truth is, in Lori’s mother’s mind, there really was a lady in her room wearing a purple hat.

 Following a person suffering with dementia into their own reality, affirming their observations  and offering re-direction, can be healing and comforting to them.( By the way, Lori’s story really happened, and happens every day. Statistics prove that one-third of all baby boomers today are now caring for family members with dementia.)

  In my opinion, the greatest tragedies elderly people can experience today are caused by three things: 1) Isolation and depression contributed by drugs that attempt to dull their senses, 2) Agitation caused by care workers (doctors included), unwilling to show elderly people the respect and dignity they deserve, by simply LISTENING to their needs, going into their reality, affirming their insights and re-directing them.(If they are confused and suffering from dementia.) 3) The inability of caregivers who have not been properly screened for their positions who lack education, and the appropriate communication skills needed to respond to the emotional and spiritual needs of people suffering from dementia. People who exercise controlling behaviors rather than supportive behaviors, even if they may be a convenient choice for the family to choose because of location, availability and scheduling should not be put in caregiving positions. (Ie: Some personalities do not lend themselves to being successful caregivers, and can actually cause more emotional suffering than good.)

 People with the challenge of cognitive impairment, are not invisible, but in many ways acutely aware of how they are being received and treated.  What they need is someone close to them lifting them up, creating win-win situations no matter how small the win-win situations may be. People with dementia need to feel needed. I originally did everything for Mom when she moved in, and then realized that she would rather make her own bed. She was thrilled when I had her vacuum the living room and when I gave her the job of making sure the plants were watered, etc. I always make it a point to create a win-win situation for her every day. Little things like folding towels and socks. “Mom, can you show me how YOU like to fold the towels.” She is so happy.  There are other things that are not easy for her to do, like initiating activities. “Mom, our social calendar today includes three items,” then I give her a choice.  Mom chooses one thing. We pick out an outfit for the day. Mom is usually thrilled to be doing something, and always enjoys interacting with others.

The caregiver and the person being cared for can design the blueprint, and then the person being cared for can have a chance to feel empowered.  This gives the person being cared for the opportunity to feel as if they are in the driver's seat, and not ignored.   For example, if mom and I end up planning a field trip to the zoo, and end up not going to the zoo, that is okay.We can be flexible.  Mom may wake up from a nap and look too tired to go anywhere, and will totally forget about the zoo in which case, maybe she needed to take a nap instead of having an activity. At other times, she will wake up and remember wanting to go to the zoo, and we will go to the zoo.  Or, if it is too late to drive to the zoo, (if mom has slept 4 hours) and if she still wants to look at animals, we will go to a pet store instead of the zoo, and will look at puppies.  She is delighted by both choices, and is still feeling as if she is having her needs met, is being heard, and is not being ignored.

  Creating win-win situations as caregivers creates the possibility of showing  the person being cared for that someone is willing  to love them and listen to them without judgment. This creates a safe place oftentimes needed to express  fears, concerns and even (from the example above), hallucinations.  Like,  seeing an ugly and annoying lady with a purple hat in their bedroom at 2AM!!

Copyright 2014 Caregivers Get Fit! Mama  Nicey    All Rights Reserved
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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