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'I'll Be Me' brings awareness about Alzheimer's

Last Sunday, June 28, CNN aired "I'll Be Me," a documentary based on legendary country singer, Glen Campbell, and his personal journey after his diagnosis with Alzheimer's disease. Campbell was diagnosed in 2011 although his deficits appeared long before that time. His wife and family embarked on a farewell tour with Campbell because they felt it would be meaningful to share his message about Alzheimer's disease and to bring awareness about the disease.

Whether you are a fan or have never heard of him, the movie is worth the time to enter into the world of dementia. Don't get me wrong, Glen Campbell's portrayal of Alzheimer's disease is not an everyday glimpse of a typical diagnosis. After all, most of those suffering from the illness and caregiving are not riding across the country on a tour bus and probably wouldn't choose that lifestyle. However, the movie is striking and illustrates the fact that those suffering with this terrible disease are all struggling. All caregivers share the same struggles — whether you're a celebrity or not. Alzheimer's doesn't discriminate or play favorites.

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The point that I want everyone to take home is that no two Alzheimer's victims walk the same walk. While there are many symptoms associated with dementia, which is a result of the brain changes caused by Alzheimer's disease, they may not manifest the same way in everyone who is affected. This story covers many of the symptoms.

Campbell began with classic memory problems and along the way his symptoms increased and changed over time. The movie shows Campbell being asked questions on the standard memory test or mini-mental exam. His responses were common "I don't keep track of the time," "I don't have any use for knowing the season," and "I haven't had to know the first president for a long time." Responses are based on denial and compensating for behaviors.

Campbell has moments of insight where he talks about his disease and what it's doing to him. He sometimes expresses his frustrations with tears and often with a laugh. Those moments are overshadowed by the times where he doesn't have understanding and reason. For example, he exhibits the common paranoia that someone has stolen his golf clubs, and there is absolutely no reasoning with him.

The physical or physiological effects of the disease are shown as his wife shares with the doctor that Campbell's behavior of urinating in the corner of the room or in a trash can has improved. He sometimes can't distinguish shadows in the room and thinks there is a hole in the floor, and as a result, he fears walking around the bed. The movie really captures the typical struggles of living with Alzheimer's disease.

His wife, Kim, also shares her story as a caregiver and the raw reality of the diagnosis of Alzheimer's disease — she now had the dreaded confirmation. This is a reality shared by many caregivers that have confided in me. Having the actual diagnosis seems to change things and now the situation feels more dismal and frightening. Families will often become angry: "It's not Alzheimer's disease." Some other type of dementia seems easier to handle. The reality, however, is that the type of dementia doesn't really matter. Symptoms of dementia are life changing regardless of the cause or diagnosis. The resulting life changes affect everyone in the person's life.

Kim explains that she wishes he would die of "something else" because she doesn't want to see the disease change the person that he was.

Here comes the mystery of the disease. Some parts of the brain are preserved longer than others and it is variable for everyone. Campbell's very developed musical part of his brain continues to function long after his ability to remember his children's names. The mysteries of the disease and how the brain is affected is the most difficult part of any dementia.

Family members will say: "How can he push my buttons and instigate a fight, yet he doesn't know where the bathroom is?" "She is manipulating me, still able to make me feel guilty, so obviously she can control her behaviors." It's hard to understand the disease and not be frustrated when one day your loved one seems close to their old self and the next day they are wandering out of the house in their underwear.

Campbell is on Aricept and Namenda, two medications used for Alzheimer's disease. However, both of these treatments are known to be more effective in some than others and usually for a short period of time. It's a frequent dilemma for families whether to continue with medications with side effects or stop them and risk decline in the ability for their loved ones to care for their needs, which may include the ability to even walk.

Campbell's journey begins on a bus touring the country. His level of functioning declines as we follow him through the movie. Moving and changing environments is known to be traumatic for dementia sufferers. His personality becomes more difficult at times and his family stands by helpless, yet nonetheless supportive of his desire to spread the word and bring dementia into the open.

Through more than 100 concerts where Campbell reads the words to his songs, he shows us that those with Alzheimer's still can read and understand. It's a fact that sometimes we overlook. I've had cases where my clients' are having trouble with speech (as was portrayed by Campbell) so I instead will write what I'm trying to tell them. Often my clients will read what I've written and indicate understanding, when they are unable to understand the same message verbally.

The most amazing part of this movie is Campbell's remaining ability to play the guitar and remember all of his old songs, despite the fact that he must read from the teleprompter. Music has been found to unlock the brain, access memories and bring people from near unresponsive states. When watching this movie, you will be in awe of the complexity of the brain.

With the numbers of Alzheimer's disease and related dementias growing, we will all be affected in some way by this terrible disease process. It is a great movie to bring awareness and let people know they are not alone. It will be released on DVD within the next few months.

Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.

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