Alzheimers Disease and their caregivers

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At the Guttenberg Care Center, from left, Kay Bailey, Dr. Janette Simon and Jimmy Powers are skilled at dealing with the daily needs of residents who live with Alzheimer's Disease. (Photo by Ammi Hugo)

Contributed by Ammi Hugo

Most people of my generation secretly, and often not so secretly, express their fear of this disease.   Whenever we forget why we went to the basement, or stand in front of the fridge wondering why we are there, or find our car keys in the fridge, that diagnosis flashes in front of our mind's eyes. We are relieved if friends joke about their forgetfulness, or we read about normal signs of aging vesus signs of dementia and sigh with relief if we deem ourselves to still be okay.

We applaud the new breakthroughs and the research that is being done in that field. We participate in Alzheimers walks and fundraisers. We try to exercise regularly and eat a healthy diet.  All the nutritional guidelines that help to prevent heart disease are important here, too.

But what happens when we or a loved one has been diagnosed with Alzheimers? To find out more, I interviewed Janette Simon, administrator, Ph.D., Kay Bailey, CNA, and Jimmy Powers, maintenance manager from the Guttenberg Care Center on Acre Street.

Before your loved one needs to be admitted to a care center, educate yourself, read about the disease and visit facilities. Discuss it with your family members and your primary healthcare provider.  Once it has been diagnosed, work at accepting and coming to terms with the diagnosis, and make use of the support groups that are available, advises Janette. It is important to remember that your loved one does not forget on purpose, so be patient with and kind to them,  and treat them with dignity.  It is important to state one's intended action and ask permission of your loved one,  for example, “Dad, may I help you to put on your shoes now?” 

When a person is being admitted to the care center, the future resident — with the help of the family, if necessary — fills out a six-page assessment form that records preferences of their life prior to admission, e.g. do they prefer to bathe or shower, sleep on their left or right side. Because all health care staff who are working with them have access to that form, it helps their new home more like home and ensure the resident’s comfort and diminish anxiety. 

Janette stresses that “all behavior has a meaning,” which makes the concept of “consistent staffing” so important. This concept of not rotating staff was implemented in 2006 and has been very successful for both staff and residents. The caregivers get to know the residents intimately because the same dedicated staff works with them every day. They are familiar with  what happened the day or week before, and they know the personality and likes and dislikes of the resident in their care.

Jimmy Powers, who apart from being the maintenance manager, is also a Paid Nutritional Assistant (PNA), loves interacting with the residents when he helps feed some of them when necessary. He exchanges jokes with them and has learned that it is a great way to de-escalate a situation if need be.  "Some only need to hear his voice to calm down," Kay remarked.  It is obvious that he loves his job.

Kay Bailey has worked at the care center  for the past 13 years and the compassion and love for her work is so visible in her demeanor. She knows them so well already that she often anticipates their needs, and thus knows how to make them comfortable and calm them down.  

Music is a very effective tool to engage them and provide pleasure — they often remember many songs and hymns that they learned many years ago. Weighted blankets,  dolls and familiar objects all help to lessen the confusion of and increase the comfort of residents. 

I came away from this visit with admiration for these unsung heroes and perhaps a feeling that if this disease would be in my future, I would be well cared for in the Guttenberg Care Center.

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