Alzheimer’s Disease: Caregiver Shares Regrets To Benefit Others

When I see an interesting title for an article posted on the Alzheimer’s Reading Room or the Huffington Post, I always look further and all too often it is written by Dr. Marie Marley.

One such title and article is by Dr. Marley, where she shares with us things she learned as a caregiver of a person she loved with Alzheimer’s disease.  The article is on the Huffington Post site and entitled, “My Greatest Regrets as an Alzheimer’s Caregiver.

Memory loss, regardless of the reason or diagnosis, is difficult to explain to those who have not had person experience.  There doesn’t seem to be anything in our daily lives that can compare or help us understand what it is like to go through the disease process, as an individual or as a caregiver.  But those who have hold a tremendous amount of knowledge that is valuable to all of us.  While every experience is unique, years of personal caregiving is valuable to anyone who is a family member or professional.

Marie shares her perspective on the concerns, dangers, and social isolation of a person with memory loss living alone.  Safety of course is of concern, as we have all heard too many stories of burnt pans, leaving a house and not being able to get back in, or their inability to reach out to someone if in need – people with memory impairment simply can’t remember how to do so.  While Marie, like others, struggled to secure her beloved Ed’s cooperation to move from home, it is often not a decision the person with memory loss is capable of making – an inability to comprehend the dangers, and simply fear of the unknown.

With experience over 25 years of experience working in this field, I like Marie found that people with memory loss like being with other people and enjoy attention, human care and touch.  It is as though they feel a sense of comfort and safety having other people around them.    Some of the most isolated people we worked with became our greatest “social butterflies” as though they had come back to life being around others, they had been so lonely at home.

I am not sure that the “transition” of moving from home to a facility is as challenging or agonizing as most think it will be.  Perhaps of greater significance is the philosophy and practice of the facility.  If the facility is equipped with trained, supported and caring staff and a person-centered approach with staff who desire to serve others, the outcomes can be life enhancing.

We all need physical contact and others who care about us, regardless of the length of time one can remember an encounter.  A sense of happiness and knowing that they are loved and cared for lingers in the spirit of those with memory loss, even when they can’t articulate that feeling.

It is such a gift to all of us that Marie willingly shares what she has learned, as well as what she regrets.  If you haven’t already read much of her work please , find her “shared learning” in these two books, “Come Back Early Today,” and her latest book with Daniel Potts, “Finding Joy in Alzheimer’s: New Hope for Caregivers.”

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