Deep Knowing for a Person Living with Dementia Changes ‘Behaviors’ into Messages

By / Posted on May 8th, 2018

Laurie Mante

Joe moved into to Eddy Village Green (EVG) in early December 2017. His wife had been caring for him at home with great devotion for several years but was completely exhausted. They had four children who were all very involved and supportive of their parents. Joe moved in with the diagnoses of Parkinson’s disease, dysphagia, delusions, adjustment disorder, anxiety, dementia and hallucinations.

Joe was came to EVG after a fall at home where he lost consciousness and spent several days in the hospital. Joe’s biggest stressor in life was his retirement. Joe had a long career in law enforcement. His life was his career, and he was forced to retire due to his Parkinson’s disease. His wife reported that he never made peace with his retirement. Two of Joe’s sons were also in law enforcement.

Upon move in, Joe was very outgoing and friendly, and had a great sense of humor. But the first day Joe was in the home, he had two falls!  We knew right away that this was going to be a difficult journey. Joe also became very anxious as soon as his family left and was wandering around the house asking repeatedly where he was. Staff reassured Joe that he was safe and tried to engage him in some reminiscing. Joe had huge swings in his cognition throughout the day, so staff really had to adjust their approaches to meet him where he was. Sometimes he was very alert and lucid and could speak very well, and other times he was very confused and could not string together cohesive words. This was extremely frustrating and anxiety-producing for him.

We learned a LOT about Joe in the first few days from both him and his family. We learned that his routine used to be to work all day, come home and have a cocktail and some cheese and crackers with his wife, and then go back out on patrol with his son at night. This explained a lot of Joe’s roaming around the house in the evening hours – he would get restless after dinner and often be found rummaging in drawers of other Elder’s rooms looking for “contraband”. Joe would eat very well at breakfast and lunch but by dinner he was “on the go”. Shabazim brainstormed with Joe’s wife and began leaving out a plate of cheese and crackers and fruit at dinner time so that Joe could walk around and be “busy” but still get some calories in him. He had good and bad times of the day due to the Parkinsons, but when his meds were on board, he wanted to be moving, not sitting – so “snacking” for dinner was much better for him than sitting at the table.

A couple of weeks after moving to EVG, Joe was very agitated and walked out of the front door of the house. He was wearing a wander tag, so the door alarmed, alerting the shahbaz. The shahbaz followed Joe out of the house, but he was jogging through the parking lot, dodging among cars, as though he was engaged in a “chase”! Luckily, a staff person driving on campus saw the situation and offered Joe a ride, so he hopped in her car and she drove him around for a bit before returning him to the house. The team was wondering if getting him out more often would help, but the family was very against this as he had tried to jump out of the car with their mother driving during a hallucination.

Again, our partnership with the family was valuable in learning key information. We think Jim was hallucinating when he left the house and was running through the parking lot.. We were concerned about his speed when he exited the house, the winter weather, and the wooded areas on the campus, so we were able to place a gps-tracking devise on Joe’s ankle in case he exited the house like that again. I want to emphasize he was not exiting the house to get some fresh air or take a stroll, he was having a delusion that he was chasing bad guys and we were quite afraid he would get lost in the woods. We also instructed staff to call 911 immediately as Joe would not be threatened by a police response – these were his friends. There were other times, when Joe was calm and curious about the weather, when he would exit the house and come right back in when he was satisfied that it was cold, snowing, etc.

We also set up the den of the house with a desk for Joe, bringing case files and official forms, so Joe could do some work. Shahbazim also created a clipboard and would have Joe accompany them on rounds to inspect things. This helped to engage him, give him purposeful work – and seemed to keep the delusions away during the late afternoon and evening, which were very challenging for him.

We tried yellow signs on other Elder’s doors who did not welcome Joe’s visits, but this didn’t work at all – Joe  had spent his whole career walking through crime scene tape! So we put up a big “DO NOT ENTER – KEEP OUT!” sign, and this, interestingly enough, worked most of the time!

The Shabazim and nurses were so creative in their approaches to engage Joe and honor his law enforcement background. We ran ideas by his family regularly, and they were wonderful. Shahbazim also figured out that every time the weather got bad Joe would get particularly anxious. They figured out that Joe was worried about his family – especially his son who was out patrolling the road in the snow. So whenever there was ice or snow, the Shahbazim would call Joe’s sons and let him talk to them. They would assure him they were home and safe and Joe could settle down for the night. They also asked his wife to call whenever she left after visiting to let Joe know she arrived home safely. Joe had always been the “protector” of his family and it was important for him to continue to play this role.

Joe also enriched the lives of staff and the other Elders in the house in countless ways. His smile and laugh were infectious. He greeted visitors, and many people coming to the house called him “Sheriff”. He watched over everyone in the house. There was another Elder who sometimes was very sad and Joe would sit next to her and quietly hold her hand. This was a poignant reminder of the gifts people have to offer even when they are struggling so much themselves.

These are just a few examples of how deep knowing, listening to Joe, paying attention to his behavior when he couldn’t use words to express his needs, and partnering with his family, helped us to help Joe live his Best Life.

Joe’s life was very hard – he fell a LOT – but what to do? Restrain him? Absolutely not. We managed the environment as much as we could to prevent injury. His family was adamant that Joe be allowed to be as mobile as his disease would allow him to be. Sometimes he was so jerky from the Parkinson’s that he couldn’t have purposeful movement OR rest. This was very hard on Joe, his family, and the staff. In early March Joe experienced a very rapid decline – he couldn’t ambulate independently at all and was very lethargic most of the time. We suggested to the family that it might be time for hospice – and that their expertise could support Joe, the family and the house. The family agreed and hospice was added as another layer of support. Joe came down with a respiratory infection in mid-March. He was running a temperature and was very weak. He was having a lot of shortness of breath. He had lost weight. Three weeks after his admission to hospice, Joe died, in the house, with his family and Shahbazim surrounding him with love. Family was there 24/7 for the last week of his life, and the whole house grieved when he died.

Joe was not with us long – just a little less than four months. But in that short time, he taught us a lot about living his Best Life, and caring for others, right up until the end.