JOAN’S BLOG – MONDAY, JUNE 9, 2014 – JUNE IS ALZHEIMER’S AWARENESS MONTH – WHO CARES?

There are at least two blogs in my head waiting to be written about the emotions and grief spousal caregivers experience during all phases of caregiving, but as the first week in June came to a close, I realized that I had not acknowledged Alzheimer’s Awareness Month. For us, it is “preaching to the choir”, but it is well worth educating those who are not only ignorant about the disease, but sorely misinformed.

The Alzheimer’s Association’s website contains information on Alzheimer’s Disease, what you can do to raise awareness, and which celebrities are lending their voices to the cause. You can attend an event, raise awareness, and/or become an advocate. Each year, during Alzheimer’s Awareness Month, I ask our members, those of you who are the warriors, the spousal caregivers, the “other” victims of Alzheimer’s Disease, to do something, even if it is simply telling one person that Alzheimer’s Disease is fatal, to help raise awareness of this dreadful disease. In one of my previous blogs, I wrote my version of why I think we should care about raising awareness . You can read the entire blog, by clicking HERE, but the main point I made was this:

"If I can save ONE person from enduring the Hell on earth of misdiagnosis and misunderstanding by DOCTORS, caregivers, and families, then raising awareness is worth it. The longer the patient and caregiver live with misdiagnosed, undiagnosed, and misunderstood symptoms, the worse the quality of life is for both of them. With proper diagnosis, education, understanding, and the proper medications, although the outcome of the disease will be the same, there may be a longer period during which caregiver and patient can enjoy a better life. This is MY answer to who should care and why."

I am sorry to be a “one note wonder”, but as I am now in my 10th year of living with my husband’s Alzheimer’s Disease, I STILL feel the same as I did when I knew little or nothing about the disease – that everyone needs to know these four facts:

DISPELLING THE MYTHS OF ALZHEIMER’S DISEASE – IT IS NOT JUST A GRANDPARENT’S DISEASE.

Everyone is at risk for Alzheimer’s Disease, not just the elderly, and it is not a simple memory problem.
Being aware of 4 simple facts about Alzheimer’s Disease can extend the quality of life for patients and caregivers. The Alzheimer Spouse website, www.thealzheimerspouse.com wants to raise awareness of the disease by dispelling the myths of Alzheimer’s Disease.  Physicians and the public need to know:

• Alzheimer’s Disease is NOT normal aging. If the doctor dismisses concerns, a neurologist who specializes in Memory Disorders can be found in any area of the country by logging onto www.thealzheimerspouse.com and clicking the “Finding a Memory Disorders Clinic in Your Area”.  

• Alzheimer’s Disease is NOT simple memory loss. It is a BRAIN DISEASE that destroys every part of the brain – behavior, personality, cognition, comprehension, physical abilities AND memory. It is 100% FATAL. There is NO CURE. There are NO SURVIVORS. YES, YOU DIE FROM ALZHEIMER’S DISEASE.

• Alzheimer’s Disease is NOT EXCLUSIVE TO THE ELDERLY. Early Onset Alzheimer’s Disease affects men and women UNDER the age of 65, and many in their 40’s and 50’s. It is misdiagnosed as everything from depression, stress, early menopause in women to Attention Deficit Disorder.  If you think your loved one has possible dementia, regardless of age, contact a Memory Disorders Specialist for comprehensive testing.  

• Aricept and Namenda can help with the symptoms and stabilize the person with Alzheimer’s Disease, for possibly up to 2 years, but they CANNOT CURE IT. THEY CANNOT STOP IT.

As I do every year, I ask that in addition to whatever else you chose to do to raise awareness, please print a copy of these four facts (click here for a version to copy, paste to a document, and print), and distribute them to anyone in your path. Leave them on bulletin boards in grocery stores; leave them on tables in doctors’ waiting rooms; GIVE THEM to doctors; pass them out in church; leave them on tables in airports.

On a personal note, I am tired of watching Alzheimer’s Disease destroy the man my husband used to be; I am tired of fighting to keep my husband’s Alzheimer’s Disease from destroying me; I am tired of listening to “experts” tell the public that they can PREVENT Alzheimer’s Disease by eating healthy, exercising brain and body, and being social; I am tired of hearing people say that this or that celebrity who has been diagnosed will “beat the disease”. I do not expect to see a cure in my lifetime, but I would like to see a more informed public, including health professionals. Only we can make that happen by speaking up loudly, clearly, and often.

MESSAGE BOARDS: Joan's Blog - Alzheimer's Awareness Month - Who Cares?

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