Monday, October 20, 2014

And Then There Was Nancy

In the late 1980's, my first year as a psychology major brought me to a  long term, state run mental health facility for older women.  Some of the women had been living on the ward for over 30 years. My assignment was to spend a few months visiting one of the residents, and to observe behaviors. Rita, (not her real name) was in her late 60's and was very skittish when I met her. Our first few 2 hour meetings were spent in silence.  I would talk, and she would briefly look at me, and would then look away,  never establishing eye contact. Having a life-time of experience living with a mentally ill parent, and working as an animal rights advocate, dog trainer, and animal handler helped me to follow Rita's lead. Dog's and horses who are skittish, need time to feel safe, and many times need to make the first move towards establishing a contact. This takes a great deal of patience and understanding, and cannot be forced. (I remember watching 3 wranglers on the ranch once, forcing a horse to do something without establishing a trusting, nurturing contact and the horse almost trampled them. They then started whipping the horse  into submission, as if the horse was the problem,  and that they needed to "teach the horse a lesson."  The horse was scared to death by their lack of willingness to build a bridge of comfort and respect before physically handling the horse.) After a few visits of developing trust,  Rita started establishing more eye contact, and started sharing things with me. She would tell me about her childhood, about her life on the ward, and would gossip about other residents, etc. I would visit Rita twice a week, and according to the staff, this  2-3 month college project was the only way that many of these women ever received visitors.

One day, the sky was so blue and the air was aromatically thick with Autumn. You could literally smell the leaves, and the pine trees in the breeze. I thought of Rita being in the sterile four walls of the facility, and thought that maybe she would like to take a stroll with me on the grounds. After getting permission from the staff, I sat with Rita and then suggested that maybe a stroll on the grounds would be something we could do together. There was hesitation from Rita, but I didn't see it. I thought that I knew for sure that she would enjoy getting out, and wasn't thinking of her initial reaction to my suggestion.  Again, I mentioned the walk in the courtyard, and with some convincing, Rita started walking down the hall with me.  About midway to our doorway leading to the outside world, Rita started hyperventilating. We stopped walking and she started mumbling and then rocking her torso.  I brought her back to her favorite chair. She slowed down her breathing and eventually stopped rocking. As tears fell down her face, she kept on repeating, "I'm not ready to leave, I'm not ready. This is my home. This is my home."  I assured her that she was okay, and would not have to leave the facility, even for a walk if she didn't want to. She then calmed down. After sitting with each other and doing deep breathing together, I asked her what she liked most about her home. Without hesitation Rita said one word, "Nancy."

Nancy was one of the nurses on the ward, and was clearly the most loved nurse by the residents. Nancy rarely raised her voice like the other nurses did, and when she was out for the day, her absence was felt by everyone. The ward  itself, even the walls,  felt different when Nancy was gone. Much more chaos existed, much more confusion and episodes of acting out, etc. When Rita had her episode in the hall, I looked back at Nancy, and she mouthed silently to me , "She'll be okay. It's alright," giving me the confidence to bring her back to her chair, etc. Nancy seemed to have a silent desire to see everyone succeed, and to be happy. Her demeanor was one of calm.

Watching Nancy communicate with the residents on the ward was my first experience of seeing anyone using validation therapy. Nancy appeared to enter into the world of whomever she was with, bringing comfort and understanding to every conversation. The residents felt very secure when Nancy was working with them, and rather than using force to get them to comply with her demands, Nancy would connect with them, and would then redirect them to follow through with her requests, having them think that whatever actions they were taking, were actions of their own choosing.  It was highly skillful and incredibly effective. It reminded me of techniques I had been taught as a dog trainer which utilized operant conditioning and positive reinforcement. And behind it all was respect, love and a deeply held conviction to maintain dignity.

Caregivers who find themselves constantly correcting people, may be trying to bring people into a reality that is not their reality. When most of us look up at the sky, we see that it is blue and filled with clouds. If the person that we are caring for has dementia and insists that the sky is red and full of flying elephants, who are we to disagree with them?  In their own minds the sky is red, and that is how they are seeing their reality. Our job is not to correct or to try to bring them back into our reality, it is to connect in much the same way as Nancy did in the above example. People need to feel safe, and that they are being heard. It is not always what we say, but how we say it that will be remembered.  The woman on the ward truly appreciated Nancy's vocal tone.  She never raised her voice, and although she had clear boundaries, she also had every woman on the ward knowing that she cared for them and would be a soft place to land if they needed her.

I was recently visiting a friend who told me of two sisters who lived together for years, until one of them had been diagnosed with Alzheimer's Disease and eventually died. My friend said, while the sisters were still living together, she would hear one of the sisters screaming at the sister with A.D. into the wee hours of morning on a regular basis.  She wasn't allowed to sleep, because her sister with A.D. would wander at night vacuuming the house, taking pictures off of the walls, and cleaning out the closets. My friend's neighbor screamed so loudly once, that the sister  with A.D. ended up leaving her house at 3AM, causing the sister without dementia to wake up the entire neighborhood by screaming in my friend's driveway dressed in her pajamas and curlers, when her sister disappeared. My friend found the sister with A.D. in her car,  which the woman with A.D. had escaped to because she couldn't understand why her sister was always yelling at her. "Why is she constantly yelling at me?"  In her own mind, 3AM meant nothing. All she knew was that she wanted to clean the house at that time, and couldn't understand why her sister was constantly opposed to her cleaning habits.

The woman in the story with A.D. eventually became so agitated from the yelling, that she became violent and had to live in a nursing home away from her sister before passing away. The woman's violent episode  against her sister was blamed on the A.D., and no one ever thought that maybe the constant screaming in her ear, and anger driven exchanges from her caregiver caused her to become extremely agitated,  which possibly led to her violent actions. No one knows for sure, but the point is that many people living with dementia are misunderstood and need to live in peaceful, nurturing, and supportive environments.

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