Friday, November 6, 2009

WEEK 10 (11-4-2009) Isearch ‘search’

When I realized I would be doing a paper, which would ask questions, then find and deliver answers, I was determined to begin my search on Alzheimer’s Disease. I first learned about Alzheimer’s 14 years ago, when my Father was diagnosed. Fortunately, today, there is a lot more information available about the disease itself and its treatment than there was back then. To my disappointment, however, there is still no cure.

I began my search on the Internet using “Google“. I typed in “Alzheimer’s Disease”. It seemed at the time, to be the fastest way to get information from the clinics and hospitals that I thought could offer the most information. I found 9,610,000 hits. I thought for sure one of these would contain the cure; I just needed to find the correct site and share my findings with my family. I am still searching.

The hospitals and clinics, provided a wealth of information regarding the actual disease process, what it is, what it does to the body, and offered treatment suggestions. The graphics and a videos were as also enlightening and I noted so in my annotated bibliography. I learned ever so much about the brain including how Alzheimer‘s disrupts the information going into and leaving the brain. It can and will eventually disrupt a person’s normal daily routine. Ultimately, they may not be able to care for themselves.

Detailed information was helpful in understanding the stages of the disease and proper care towards individuals with the disease. It also explained evaluating behavior, and methods of responding to behavioral situations. It has helped me understand why my Dad may say or do certain things. I will no longer feel I am a poor hostess if he seems disinterested in going places with me while he is visiting. Exhaustion and anxiety are part of the disease process.

The hospital web sites and caregiver links alerted me to other factors. One such concern was swallowing. I never thought of that. I learned not only “what to do” and what not to do but why when taking care of someone in the later stages of the disease. I look forward to cooking my Dad’s favorite meals while he stays with us. One more detail to pay attention to.

I was surprised to find several websites geared to young children addressing Alzheimer’s. This would make sense, there are all kinds of children of Alzheimer’s parents out there too. Not all of us children are adults ourselves.

Meanwhile, “Google” led me to many organizations (some local), blogs, clinical studies,
research and articles focusing on Alzheimer‘s in one way or another. These provided information on the risks of getting the disease, statistics, testing and ethics. I learned about the gene APOE e4, a typical sign of the disease. I am reading further to see the “chance” of inheriting the disease. Now that the factors of “early” or “later” onset have come into the picture. I no sooner get close to an answer, and 10 more variables surface.
So, I will continue my search today.

I followed the links for “caregiver” in particular. It has proven to be my greatest source for acquiring information. I have kept those web sites and addresses in a log by date accessed.

Being skeptical, however, I followed up to check the authenticity of the places and individuals providing the information and running these sites. Such is noted in my annotated bibliography.

I just read an article (online) where Dr. Daniel Alkon, science director of the Blanchette Rockefeller Neurosciences Institute, in Morgantown WV, states in 12-18 months, a skin test may be available for early detection of the disease. Early detection could encourage earlier intervention. I am following that now to see if it may be a reliable method to test for the disease, should I decide I want to do that myself someday.

I read an article in my local paper months back about this disease, written by Carol Higgins. I kept the article knowing someday I might want to refer to it again. I contacted the writer and spoke with her staff. I went to the physical location of the organization, the Eastern Agency On Aging in Bangor, and selected several pamphlets from their waiting room too. These pamphlets led to more contacts and phone calls. I learned about a program at the local high school.

Periodically, Bangor High School Adult Education provides a 6-week module discussing Alzheimer’s disease, a great resource for caregivers and family members. Since, the classes were on the same night as when I teach Art there, my conversations with Kristie Minor from West Gate Manor, the facilitator of the Caregiver program, were by phone.

Jody McKenna took most of my calls directed at trying to reach Ms. Minor at West Gate Manor. She is a physical therapist there. I explained my mission. She said she would be giving a class at the High School on September 30 called, “ Keeping Everyone Safe and Moving”. I now had another key word to “Google”: Alzheimer’s Disease safety. That net another 2,310,000 hits.

These “safety” links were a great find. They alerted me to safety issues that I could address in preparing for my Dad’s upcoming visits. I have since shared a few with my Mom. These “safety” links provided insight into the mind of one with Alzheimer’s and offered suggestions and “redirection” methods.

Janet ( I need to ask her last name), a librarian at EMCC, was a tremendous help. She gave me a pamphlet called “Nursing Resources” to access/locate books, online journals, and print journals. I took the titles given there, most could be viewed online in some form. Because of my interest in Biology and the sciences, I wanted technical information and clinical studies regarding Alzheimer’s. Again, trying to understand why some do and other’s do not get this disease. I was trying to determine if the disease was a normal part of the aging process. It is not, I discovered.

Lots of reading. Some information I will use in my Isearch paper, other information is too technical for this paper, as it was geared to nurses and staff. Still, I read it because I wanted to know…everything about Alzheimer’s.

When I was told by staff at the Eastern Agency On Aging, that the local radio station, MPBN, aired a program this year about Alzheimer’s, I contacted them. I got the online website. It noted 22 programs. I still have a lot of them to cover. Most were on caring for the caregiver.

I checked the local phone book to seek out local Alzheimer’s support groups, assisted living facilities, and contacted the administrators there. Several sent me information by mail. Staff there were helpful when I stated my mission. I was given names to follow up with for additional questions I might have: Angela Lufkin, Gentiva Home Health; Mark Stewart of Beacon Hospice. Ms. Lufkin and Mr Stewart never returned my calls.

Online information, websites, the library, local agencies, pamphlets, newspapers, books, radio station and personal referrals have been productive. I continue my Isearch, answering so many of my original questions, yet proposing so many more.

1 comment:

  1. I feel guilty, carolyn: you've done so much, worked so hard, pursued so many leads, gone that extra mile and then another, but there's no such grade as AAA, which will no doubt be what you deserve to earn. I feel bad I can't give it to you.

    You might try google groups for online support for Alzheimers caregivers.

    In one or two places here, you start to give information about the answer, about what you found out, and you should try to avoid that.
    Apart from that minor problem, this is a model section, a section to inspire future students--or depress the hell out of them when they see what can be done with the right will, spirit, and ingenuity and what they probably won't do....