Wednesday, October 15, 2014

Waiting For The Bus

   The shopping van had arrived, and when Maggie was quizzed by the driver on her friend Heidi's whereabouts, she shyly said, "I think she went to the restroom!"  The van driver waited 10 minutes before pulling away from the assisted living facility, leaving Heidi behind.  Twenty minutes later, Mabel wanted to use the  lobby's rest room,  but noticed the door had been locked from the inside. So,   Mabel thinking the rest room was occupied, went back to her room and watched an episode of, "As The World Turns."  The day went by, still no Heidi,  and the driver of the van just assumed that Heidi had gone back to her room, and Heidi was never reported as missing.

  Four hours had passed,  and 3 people had complained about not having access to the lobby's rest room. The custodian, wearing a tool belt and kaki pants was summoned to fix the broken lock.  Knocking on the door by several people had yielded no results and a sudden panic set in. ( FYI: This happened in the early 80's. I think by now, most facilities have keys to their restrooms to avoid this scenario.) Before calling the fire department, Mrs. Anderson, the building supervisor decided to enlist  the assistance  of 2 janitors who used drills, screwdrivers, wrenches and rubber hammers to take down the door. An hour later, the metal door had been completely removed from it's hinges by two janitors.  And there in front of residents reading magazines, the receptionist and building supervisor solved the mystery of Heidi's whereabouts.  Heidi was peacefully and pleasantly sitting on the toilet fully dressed in her winter coat, gloves, hat, and color coordinated purse,  totally oblivious to the activity around her. When she wouldn't budge from her perch, Mrs. Anderson, the supervisor said, "Heidi, what were you doing locking yourself in the restroom,  and sitting on the toilet in your winter coat for 5 hours? "Why didn't you open the door when we wanted to know if anyone was in the bathroom?" "Do you have any idea of the trouble and expense people went through to open this door?" Heidi,  appearing to, " come to, " took in a deep reflective breath and then paused, creating a defensive and slightly annoyed posture as if someone had asked her the most absurd question in the world.  And then, with delightful confidence, she lengthened her spine as if she had just remembered the winning letters to a "Spelling Bee" competition answering, "I was waiting for the bus!" " I was waiting for the bus, okay?"

It wasn't long after this incident that Heidi was asked to leave this facility and admitted into a long term nursing home for people with Alzheimer's Disease. Heidi was still ambulatory when she took up her permanent residency in the home. Soon, with much medication and  with very little creative stimulation, Heidi's health deteriorated, and Heidi died.

 How would the above scenario have played out, if Heidi was a 5 year old? What would have happened if Heidi's caregivers would have been people trained in proper communication techniques that honor the gift of presence without judgement?  How might the dialogue have gone? Let's just say that Heidi was a 5 year old who had been observed, on many occasions as being a child who liked to play "hide and go seek?" The caregivers putting the people on the bus would have been able to see that  5 year old Heidi was not present, could have followed through on the lead from her friend by knocking on the bathroom door. Seeing that the door was locked , a caregiver could have said, "Come out. come out wherever you are!"  Or for an elderly woman, "Heidi, the bus is leaving now. Come on,  Heidi,  time to have a fun shopping day. We saved you the best seat, Heidi!"

Greeting Heidi with accusatory questions such as Mrs. Anderson's response can cause even more confusion. Most people suffering from dementia understand that something is wrong with them.  They can easily become depressed and withdrawn from accusatory words and actions by caregivers. When a small little baby "spits up" on us it is expected. We understand that babies are spontaneous, and nothing can be predicted. We just prepare ourselves for everything and lovingly interact with our baby in playful and helpful ways. When a person has dementia, they are also spontaneous and unpredictable. And "yes" sometimes they may "spit up" on us by doing things that are inconvenient like locking themselves in the bathroom while waiting for a bus. These types of behaviors are to be expected, and through positive affirming communication, we can prepare for them.

A friend recently gave me the analogy of losing one's keys when she said, "A person who is forgetful, is like a person who loses their keys. The individual may not remember where they originally placed their keys, but eventually finds them. Whereas, a  person with dementia sees a set of keys in the palm of their hand, can't remember why the keys are in their hand, and can't seem to recall what the keys in their hand are used for."

 However, from what I have seen, is that the person with dementia knows they don't know and are confused and scared,  all at the same time.  One thing that I have communicated to someone with dementia (when there appears to be frustration from forgetting) is, "Would you like an update?"  I never would say, "Are you confused about the keys?" I would never specifically point anything out by asking direct questions, but proactively leave a space of acceptance without judgement followed by silence. If the person with dementia chooses to respond, they may say, "Can you give me an update?" Or at other times a person will say, "I'm fine." There are other times that amazing wisdom is expressed which comes out of nowhere, and can be liberating, leaving an opening for deep intimacy and spiritual connectedness.  But these moments can only happen when there is a feeling of trust, acceptance, and non-judgement.

   In Heidi's mind she was just waiting for the bus, and since it was cold outside, the warm and quiet bathroom was a very logical solution to her needs. She wasn't aware of the passage of time. Only the warmth,  peace and quiet comfort of a secure environment.

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