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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.”


Wednesday, May 13, 2009

The Alzheimer's Project - Review of Grandpa, Do You Know Who I Am?

The Alzheimer’s Project
 
Grandpa do you know who I am?

 
Of all the segments in the Alzheimer’s Project, I found this one the most difficult to watch. In fact, I cried all the way through. As a mother, it hurt to see all of those vulnerable children who love their grandparents unconditionally, struggle to understand why does my grandparent act this way? Why is this happening to this person that I love? If they love me, why are they acting like this?
 
As adults, we pretend that we understand this disease and that we are not hurt by the behavior of our loved one with AD.   However, many times the adult children and adult grandchildren of my clients tell me they cannot understand why their loved one is being so mean to them. Why is this person so angry? Why does this person hate me so much? Why can’t she remember my name?
 
In one segment of this episode, a grandchild tells that her grandmother had slapped her one day while the grandmother was in the nursing home. Although the granddaughter seemed to intellectually understand that the behavior was a result of the disease, it was apparent that that slap really hurt and that the memory of that slap would remain with the granddaughter for a very long time. Another segment shows a grandmother growling at her grandchild and telling the child to go home. The child’s older sister comforts her and reminds her that the grandmother is ill and does not really know what she is doing.
 
Throughout this segment, we see grandchildren taking care of their grandparents – combing their hair, walking with them, helping them to eat. Although it is painful for them to watch their grandparents deteriorate, I believe that each one of these children will be better for having learned compassion and service.
 
Maria Shriver’s narrative is compelling and true. Here is the daughter of one of the most accomplished, intelligent people in the U.S., and she tells us that she must introduce herself to her father every time she sees him. “Hello, Daddy, I’m your daughter, Maria.”

In the end, though, Maria says she is just happy that he is still here. And I believe that in the end, children and grandchildren of those who suffer with AD are just glad their loved one is still here.


Tuesday, February 10, 2009

Book Review: Memory Lessons: A Doctor's Story by Jerald Winakur

 

Book Review:
 
Memory Lessons: A Doctor’s Story by Jerald Winakur
 
I’m an admitted insomniac and a voracious reader. Thankfully, I can combine the two habits so that I can at least be productive during my periods of insomnia. I picked up Dr. Winakur’s book last night, and finished it by morning. Oh, I did get a few hours of sleep in between chapters.
 
 
Dr. Jerald Winakur, a seasoned geriatrician, writes a series of essays reflecting on his medical career and on the physical and mental decline of his father from Alzheimer’s disease. Dr. Winakur is a medical professional who treats the old-old, defined as those over the age of 85, but he is also a son facing the uncertainty of dealing with his old-old father’s declining mental and physical capacities. A son who, although not legally his father’s physician, is his father’s surrogate decision-maker.   Dr. Winakur exposes the human side of a physician - the side where the scientist and trained professional meets the man with doubts about the efficacy of the treatments prescribed for patients and the man with concerns about the ethics of those treatments. Dr. Winakur struggles with the lessons he learned early in his career – to keep the patient alive – with his life lessons. Those life lessons teach that sometimes it is better to let the patient go.
 
Those caring for loved ones with dementia will likely recognize the feelings of guilt and uncertainty that come with the day to day care of someone who no longer recognizes the caregiver. They will empathize with the family’s agony over deciding where the loved one should live, what treatments should be authorized, how to react to the repeated questions and how to deal with the endless wanderings in the night. 
 
Dr. Winakur also exposes some of the flaws in the medical profession, and ties many of those flaws to the system by which physicians are compensated. He raises concerns about the rising number of specialists who are well compensated for procedures, and the stingy compensation afforded family practice physicians, internal medicine specialists and geriatricians who are responsible for using their reasoning skills to diagnose and treat most of the nation’s patients. Specifically, he lays the blame on the Medicare system of reimbursement, the rates determined by a board of physicians heavily weighted with specialists earning their living by doing procedures on patients.
 
I recommend this book to those caregivers beginning their journey with the loved one with Alzheimer’s disease, for they can learn what may come. I also recommend this book for those who are at the end of the journey, for they can find a kindred soul.
 

Saturday, December 13, 2008

Veterans of World War II Remembered on Pearl Harbor Day

Sunday was the 67th anniversary of the attack on Pearl Harbor and I found a few articles on survivors of the attack in the Atlanta Journal Constitution and online. According to the Department of Veterans Affairs, there are less than 5,000 current members of the Pearl Harbor Survivors Association. At its peak, there were 20,000 members of the Association. As of Sept. 30, 2008, there were 2.6 million World War II veterans. Those veterans are dying at the average rate of 851 each day, with 310,777 expected to die by September 30, 2009. 

 
Therefore, it is important to capture the stories of those WWII veterans still living. The Library of Congress is conducting the Veterans History Project and seeks interviews, photographs, correspondence and other objects related to veterans. The website can be found at: http://www.loc.gov/vets/about.html and contains tips on conducting interviews of veterans to collect their first-hand account of their service. Here is a link to the Biographical Data form required by the Project: http://www.loc.gov/vets/pdf/biodata-fieldkit-2007.pdf. Here is a link to suggested questions to ask the veteran: http://www.loc.gov/vets/vetquestions.html
 
You may also learn about how to conduct an oral interview with your loved one at StoryCorps. http://www.nationaldayoflistening.org/
 
If you want to do some research on enlistment records or the Pearl Harbor Muster Rolls, check out the National Archives at: http://www.archives.gov/research/arc/topics/ww2/
 
For information about Veterans Pension and Aid & Attendance Benefits, please check out our brochure at: http://www.elrod-hillfirm.com/global_pictures/EHLF_Veterans%20handout.pdf or give us a call at 770-416-0776.

Saturday, December 13, 2008

DWE or Driving While Elderly

As the parent of a 16-year-old soon to be licensed driver, I think a lot about whether she will be safe on the roads -  and whether others who have to share the road with her will be safe!  At the same time, I worry about whether my aging clients are safe on the roads – and whether others are safe on the same roads with those aging drivers. In my practice I am regularly told stories –some funny and some frightening – about aging or impaired drivers. 

 

For my 16-year-old, the ability to get in the car and drive wherever she might like to go signals the ultimate freedom.  For my aging clients, the thought that they will no longer be able to drive wherever they want signals the end of that same freedom.  That is why the issues involved with the elderly drivers are so difficult and why we need to consider the options carefully before taking any action.

 

The families of the elderly often ask how they can get Mom or Dad to stop driving.  The story is usually that Dad or Mom runs stop signs, gets lost, or drives 25 miles an hour while other drivers zip by them at 75 miles an hour.  How do we know when its time to take away the keys?  And how do we take those keys away without a fight?

 

Clearly, there is no magic age at which driving skills decline, so what are some of the signs that Mom or Dad should either curtail some of their driving or stop altogether?

 

The website Aging Parents and Elder Care has a list of signs that a driver’s skills may be declining.  Among those signs are the following:

  

* Driving at inappropriate speeds, either too fast or too slow

 

* Having one or more near accidents or near misses

 

* Getting lost repeatedly, even in familiar areas

 

http://www.aging-parents-and-elder-care.com/Pages/Checklists/Elderly_Drivers.html

 

 

If Mom or Dad is showing some of the signs of declining skills, try to determine whether there is a medical reason for the decline that may be corrected with proper medical care.  Similarly, determine whether the elder may be able to modify their driving to accommodate the decline. 

 

Once you have determined that the problem is severe and the elder must completely stop driving, how can you get them off the road?

 

Here are a few suggestions:

 

* Confront Mom or Dad and let them know that you are afraid that they will injure themselves or others if they continue to drive.  Help them find alternative transportation options.  For help with this conversation, check out The Hartford’s Family Conversations with the Older Driver at:

 

http://www.thehartford.com/talkwitholderdrivers/having/main.htm

 

 

* Contact the Department of Motor Vehicles or have your loved ones doctor contact the Department of Motor Vehicles to report that the driver is no longer safe.

 

* Finally, you may have to either disable or take away the car. 

 

To help older drivers continue to drive as long as possible, consider driving classes offered through AARP.  You can find classes near you by checking out the AARP website at:  http://www.aarp.org/family/housing/driver_safety_program/


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