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    Posted March 28, 2011 by
    Cincinnati, Ohio
    This iReport is part of an assignment:
    What I Know: Alzheimer's disease

    Secrets I've Learned about Alzheimer's Disease


    I write to you as a family caregiver, professional caregiver, educator, operator, researcher and author on exemplary programs for enhancing life for individuals and families experiencing Alzheimer’s disease. 

    For the past 24 years I have spent each day with individuals who have been diagnosed with Alzheimer’s disease or a related dementia, the families and friends who love them, and the employees who care for them.  This residential facility was the first dedicated Alzheimer’s disease and dementia facility in the United States and has been a home to hundreds of individuals over the years.

    I never intended to spend my career, essentially my life, dedicated to these folks.  But despite my intent I, like many others on staff, have found this vocation one where you have an opportunity to positively impact the life of another human being.  Personal benefits are found in the care and nurturing of individuals with dementia and the influence one can have on the journey for families.  For me the surprising, yet most touching, is the discovery of a population of people who are truly the “angels on this earth,” the individuals who have chosen to work and care for persons with dementia when home is no longer an option.

    While most of what we hear about those who work in long-term care is not positive, what I have experienced is that when the employees are respected, valued, educated, supported, nurtured and have a “voice” in the organization, they make miracles happen.  Most of the people I have met have selected this work as a vocation.  They choose to care for those who no one else would or could.  And they do so with no expectation for gratitude, acknowledgement or accolades.

    For individuals with dementia this is particularly significant, as they have no voice, no ability to advocate for themselves and must be surrounded by employees who truly care - who choose to serve residents above all else.  Sadly, this is not what we find in most of our healthcare environments today.   Not every long-term care or acute care facility is the same.  They are as different as night and day.  But many exist whose mission it is to serve; to serve every resident, family member, visitor and each other, which can make all the difference in the Alzheimer’s experience for everyone.

    For over 24 years, having worked with over 1,000 individuals with dementia and their families, we have learned a great deal.  First and foremost, a fact that we recognize and teach (having conducted over 100 national and international presentations in 13 countries around the world) is that each and every individual with Alzheimer’s disease is the “love of someone’s life.”  As we all have someone in our life we think we cannot live without or would choose not to - so do they.  Someone, somewhere, loves each and every person with dementia as much as we love that special someone in our life.  And they should be cared for and nurtured in the same fashion we would wish for the person we love the most.  When this is the expectation for employee performance, the outcomes are uniquely different from the negative stories we too often see.

    What have we learned and do we know?  (Input from staff members)

    ·         The “person” is still in there and there are always ways to touch them.

    ·         While we as non-family members do not know “who” they were, we love and accept them for who they are now.  We enjoy their warmth, compassion, knowledge, experiences, dry senses of humor and their unconditional love.

    ·         We must preserve their dignity when they can no longer do this for themselves.  The disease affects everyone; university presidents, CEO’s, professors, engineers, mothers, fathers - anyone, at anytime.

    ·         That as health professionals we must redefine success in this population - they will not get better and go home.

    ·         People need people - individuals with dementia do, too.  They are very accepting of one another, in the “same boat” so to speak, thus a sense of belonging results, creating opportunities for success, happiness and joy.

    ·         Families get a diagnosis but all too often little else.  Families need ongoing education and support so that they know they are not alone.  Families need a number to call in the middle of the night - that a live person will answer - and assist them. 

    ·         We can help families continue to be part of the life of a person with dementia and that it will be necessary to support them through all of the transitions their loved one will make.

    ·         Families must know that stepping away from care giving periodically, or at any given time, does not mean that they love that person any less.

    ·         Sometimes the best thing we can do is just listen.

    ·         Employees see this work as a blessing in their life.  Each day they learn something, get a hug, smile or friendly comment from a resident or family member.  They know they are making a difference.

    ·         Serving others with patience can come as naturally as breathing.

    ·         No two days are alike and you may experience one of the happiest, sadist and funniest days all in one day.

    ·         A progressive disease with continuous change which must be anticipated and expected, it is important to appreciate and celebrate the smallest gain or joyful moment.

    ·         We have learned a great deal about not taking life for granted, making each day a little more special.

    ·         We have seen and experienced the true meaning of “unconditional love.”

    The secret is we really get far more than we give - the rest of the world simpl#y does not know it.

    Susan Gilster, PhD, RN, FACHCA

    Executive Director

    Alois Alzheimer Center

    70 Damon Rd

    Cincinnati OH  45218



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