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Wednesday, May 13, 2009

The Alzheimer's Project - Review of The Memory Loss Tapes

The Alzheimer’s Project
A Review of The Memory Loss Tapes

 
Like most Baby Boomers, I have a fear of developing Alzheimer’s Disease. As an Elder Law attorney, I witness the struggles of the adult children of parents who have Alzheimer’s Disease (AD) as they try to understand what is happening to their parent and wrestle with the best way to care for their parent as the parent slowly fades away.
 
The Alzheimer’s Project is intended to open a dialogue about Alzheimer’s Disease, to show the disease from several perspectives – that of the person who has AD, the children and young teenagers who have relatives with the disease, the scientists and doctors struggling to find treatments and a cure, and from the caregivers.
 
The Memory Loss Tapes, the first episode in the documentary series airing on HBO this week, is viewed from the perspective of those who have been diagnosed with AD. Each segment shows someone in varying stages of the disease, starting with Bessie who is in the very early stages of the disease and ending with Cliff’s death from complications from the disease.
 
Although much of this episode is frightening, much of it is happy, sad, and hopeful – often all at the same time.
 
We are first introduced to Bessie, an 87-year-old widow living in a small town in Wisconsin who was diagnosed with AD two months before her part of the documentary was filmed. Bessie is still living her normal life – for the most part. She lives by herself with her dog, Skipper, and still drives, cooks and performs with a singing group. She struggles to remember the words to songs and forgets the names of people she has known for years. Bessie is aware that she is forgetting things, but she is determined to continue the activities she has enjoyed for years. Although she understands there is no cure for the disease, she hopes for a couple more good years with donepezil, (known by the brand name, Aricept) a medication prescribed by her doctor.
 
Fannie, an 82-year-old widow in St. Louis, represents the second phase of the disease. Fannie’s segment is probably the most familiar and the most disturbing to those who must care for a loved one with AD, because Fannie has little awareness that she is suffering from AD and is irritated with those who try to keep her safe. When we first meet Fannie, it is three months since her diagnosis. Fannie’s doctor told her to quit driving, which she says makes her feel “inadequate” and “completely dependent on someone else.” Fannie takes an assessment test to determine whether she must stop driving. When asked to rate her driving ability, Fannie chooses Above Average. As part of the assessment, Fannie must take a driving test. It is frightening to watch as we see that Fannie cannot remember how to put the car in reverse, sees traffic signs in places where there are none and cannot figure out a right turn from a left turn. After the test, Fannie believes that she will be able to continue to drive. When Fannie is told that she can no longer drive, she is very upset and says that “they” are taking away her independence.
 
The Joe’s Blog part of the documentary was very difficult to watch. Joe, just 63 years old, was diagnosed with AD two years before the documentary was filmed. He writes a blog he calls Living with Alzheimer’s. Before developing AD, Joe was involved in the computer industry. He describes himself as having been a genius, involved in helping some of the computer companies become the largest in the world. Now, Joe gets lost in his own backyard and is afraid to go out of the house because he may not be able to find his way home. Indeed, when he takes his young granddaughter to the park, he forgets how to get out of the park. Thankfully, his granddaughter remembers how to get home.
 
Joe very candidly tells the camera that the medication he takes for AD killed his sexual appetite. During a visit to his psychologist, Joe describes the disease as being like someone shaving slices of him – like at the deli when they shave the meat and little scrapings and pieces come off. The most difficult part for the viewer is to see Joe talk about taking his own life when he gets too far along. Joe feels that he will soon reach the point when he will end his life and he buys a wooden box – presumably for his ashes – and shows it to his family.
 
Yolanda Santomartino, age 75, represents AD in the later stages. Yolanda slumps in her wheelchair, no longer able to walk or to sit up straight. She talks to herself in the mirror, believing that she is talking to someone else named Ruth. Yolanda gets tired of talking to Ruth through the “window” because Ruth does not talk back to her. Yolanda is frightened by a ribbon on her chair, which she believes is an animal, and becomes agitated when she thinks snakes are in her wheelchair. Her caregivers struggle to calm her, and often play along with her fears by trying to mash the snakes in her chair. Family members will feel the pain that Yolanda’s son feels when his mother does not recognize him when he is sitting next to her. As Yolanda cries, “This is no life.”
 
Woody Geist, Age 81, was diagnosed 14 years before this documentary was filmed. He lives in a Sunrise assisted living memory care facility, and spends most of his day wandering around, whistling, and trying to figure out where he is going. Despite the fact that he is married, he has a “girlfriend” at the assisted living. She refers to Woody as her husband.  Old home movies show Woody hamming it up in front of the camera, singing with a men’s acapella singing group. We rejoice with Woody when he appears at a performance of his old singing group, and, although he cannot remember any of the members of the group, he does remember the words to the songs. Woody’s favorite phrase is “We’re lucky. I am glad we can be together.”
 
Josephine Mickow, age 77, does not talk much anymore. She makes sounds and whistles, but we barely hear her speak.  She lives with her daughter in a small house in a rural area.  Her daughter’s spinning group put a fence around the perimeter of the yard and now Josephine wanders aimlessly in her yard fiddling with the fence, as though trying to get out of the yard. Her daughter gave up her job in the city to care for Josephine, and now just gets by making yarn from the llamas and alpacas she raises and selling her goods at shops in her area. The most difficult part of Josephine’s piece is when Josephine puts a pebble in her mouth and her daughter has to stick her fingers in Josephine’s mouth to pry the pebble out. Josephine was an artist, and still leaves little vignettes of vegetables, glasses, and other found objects around the house. Her daughter preserves these vignettes through photographs.
 
The final segment features Cliff Holman, age 79, who was diagnosed 6 years before the documentary. We meet Cliff in the last stages of AD, being cared for at home by his wife with help from hospice nurses. Cliff was a children’s entertainer called “Cousin Cliff”, and had a daily children’s television show. He gets agitated because he believes he has to get to the television station to do a show. His wife struggles knowing that in his living will he asked that his life not be prolonged by artificial means, but feeling that she does not want to lose him. In the end, Cliff is taken to a hospice facility and we watch his family say their last goodbyes and grieve with them when the hospice nurse nods her head and says “he’s gone.”
 
 
The last scene shows Bessie searching for her car, and the viewer knows that she has just begun this incredibly difficult and painful journey, with Bessie just slipping away until her life end like Cliff’s.
 
Although some people may find this part of the documentary series difficult to watch, I found some hope here. The families of those suffering with AD, though stressed and grieving, also found joy and happiness in taking care of their loved ones. Though they often described their loved one as slipping away, I found that each person retained some part of their personality throughout the stages of the disease. Even as Cliff is in the final stages, he is waving to the camera and saying “I’ll see you on smellivision.”


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