Knowing the Person's Story
By Verna Benner Carson
When we are working with those with Alzheimer’s it is important to know their stories! What is their history? Where did they live? Who comprised their family? What are some of their most powerful memories? What did they do for a living? And what were their hobbies? If you’re not getting the picture, you might wonder why all of this matters.
It does because the person with Alzheimer’s increasingly lives in the past so that the “old memories” are new again. This applies to so many things in their reality. For instance, a gentleman I remember would become very agitated when it snowed and fret that the animals would freeze if they weren’t protected. At first the family thought that Dad was having a psychotic episode since he had never talked about animals before. Then one day his children discovered a very old picture of their dad when he was a little boy. It was probably taken in the 1920s and showed their dad standing in a field surrounded by cattle. This was right before the Great Depression, when his family lost their farm and the gentlemen lost his dad. He would have been a great grandfather to the current children, who knew nothing about these losses. Their dad had never talked about what he’d been through, but now he was reliving it. Once the family realized what was happening, they would reassure their father whenever there was bad weather that every animal was locked safely in the barn. He continued to ask about the animals when it snowed, but he was able to relax after hearing they were safe.
Another Another gentleman had been a wood carver all his life and now lived in North Carolina with his son and daughter-in-law. They were concerned about his failing memory and had him evaluated by a geriatric neurologist, who diagnosed the man with Alzheimer’s at Stage 4-5 on the FAST scale. The family worried that it was no longer safe for Dad to carve word, but the doctor assured them that wood carving was second nature to their father. They just needed to watch him and they would know when this hobby was no longer safe for him. They did over the course of several years as his Alzheimer’s continued to grow worse. Finally, they decided assisted living was the safest place for him.
When he was admitted to the facility, the daughter-in-law told the staff how important carving was to Dad and supplied him with bars of Ivory soap and plastic picnic knives every week. The old man would sit in a chair with a trash can between his knees, lean forward, and carve the Ivory soap. Did he carve the beautiful woodland figurines that he had once carved? No, but he continued to carve. His family knew how important this was to their father’s well-being, so they made it happen in a very safe way.
Another story that stands out for me occurred at a home care agency in Phoenix, Arizona. I was working with this agency when they received a very challenging referral for a gentleman who had early onset Alzheimer’s disease. He was in his late forties and had become quite aggressive so his wife put him an assisted living facility with a wonderful reputation. Once there he continued to pose problems and became quite aggressive whenever the caregivers wanted him to bathe, change his clothes, or engage in any of the normal activities of daily living. The facility asked for help from both the doctor who had diagnosed the man and from the home care company where I was consulting. I accompanied a nurse and an occupational therapist into the facility and we spent time talking to the gentleman in question and reviewing his chart. Then I asked whether we could talk with his wife.
When we met the wife, I asked her to tell me “his story.” Who was he? What did he love to do? What was his history? Was he an aggressive person? Was he prone to anger? What were his hobbies? What did he do to relax? In brief, I asked her to paint a picture of him so I could get a sense of him before the onset of Alzheimer’s The wife, who was clearly grieving the person he “was,” tearfully fulfilled my request. When she recounted his story she described a man with boundless energy, a daily runner who had successfully participated in multiple marathon races. Before developing Alzheimer’s he ran five miles every morning, but the running stopped one day when the police brought him home because “he couldn’t find his own way home.” After hearing this, the proverbial light bulb went off in my brain and I asked what exercise he was getting in the facility. The extent of it, as it turned out, was walking the halls and participating in chair exercises with residents in their seventies and eighties. So I suggested having a treadmill brought into his room, so he could channel his energy into running. Everyone agreed this was a good idea and the wife had a treadmill brought into the room. He immediately got onto it and ran five miles. The aggression stopped!
Another person in assisted living insisted she couldn’t eat breakfast until the children came. Mary would wait patiently at the front door of the facility and become increasingly worried because “the children were late.” “Were they okay?” she asked as she waited for hours, refusing to leave even to eat a meal. Again the family was consulted and asked what this troublesome behavior might mean. The daughter reported that her mother had been an elementary teacher for years and one of her responsibilities was to wait for the school buses to arrive and escort the children into the school. Once the providers at the facility knew this they would say every morning, “Mary, the buses are late because of the weather. Let’s get you something to eat and we will come back to greet the children.” This therapeutic fib allowed Mary to stop worrying about the children and proceed with her day.
You probably have to get on with your own day, so just one more story. A gentleman was referred to a certified home care agency for wound care. He also had Alzheimer’s and was aggressively resistant to every nurse who came to see him. Once he had been a fighter pilot in World War II, and pictures of airplanes from the war covered the walls of his home. Three nurses missed the chance to see them because they refused to visit the man. But a fourth nurse, who did come, remarked on the pictures before she even mentioned the purpose of the visit. When she asked the man about the pictures, he became animated and told her the story behind each one of them. While listening intently, she asked if she could take care of his wounds. He agreed and she completed the wound care successfully. By the time the nurse left, she knew a lot more about fighter pilots and the old gentleman was smiling.
The stories of our patients are like valuable, buried treasures. When caregivers can unlock the past and dig up these stories, it is a transforming experience for the story teller and the listener, too.
Verna Benner Carson, Ph.D., CNS/PMH-BC, is president of C&V Senior Care Specialists and Associate Professor of Nursing at Towson University in Baltimore, MD. Dr. Carson can be reached at firstname.lastname@example.org.