Mar 26, 2012

An Outsider’s Perspective – The Good, the Bad, and How It Might Help Family Caregivers

Our “outside” perspective cannot stay that way exclusively. We have to get to know the inside of the person.

By Monica Heltemes

I have written before for Alzheimer’s Reading Room, but have not shared much about how I gained the experience I have with Alzheimer’s.

Years ago, I did have a grandma with a form of dementia. I heard about her mistakes made at the dress shop she owned, getting lost in town, and later, watched her have difficulty eating. But for the most part, I was too young to understand much about it.

My primary experience has come from many years as a health care provider working with persons with dementia – first as a volunteer, then as a nursing assistant, then as an activities coordinator, then as an occupational therapist. I have worked in long-term care, assisted living, a memory care unit, and in private homes, all doing occupational therapy.

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I have worked with many families of persons with dementia over the years. In these cases, I have the “outside” perspective as the therapist; I do not know the person as “Mom”, “Dad”, “Husband”, “Wife”, etc. I have explained to these families the drawbacks and the benefits of having this outside perspective.

On the negative side, I usually have only just met the person a few weeks prior to having discussions with families. I do not fully know the person’s history, preferences, funny stories, embarrassing stories, scary stories, etc., like family members might know. I definitely try to get as much background information as possible , but it is not the same as knowing the person closely before the dementia was present.

On the plus side. I do not know who the person was before the dementia was present. I know Tom, who I met a few weeks ago. I know he likes to push the carpet sweeper under the table after meals. I know that he loves to whistle back at the birds in the aviary. I know that he often is looking to “go home” in the late afternoon, but can be reassured when I walk with him, listen to all the things he needs to do at home, and acknowledge for him what a hard worker he is and how much his family must appreciate him.

I can see Tom for who he is right now. I do not dwell on what has been lost, because I do not have that knowledge or perspective. I see what capabilities he still does have and how those can be used when helping the staff to clean the dining area or during other activities adapted for dementia.

There was a recent comment from a reader on the Alzheimer’s Reading Room blog that coincides with my experience perfectly. The reader suggested that a fast track way to learning about being an accepting, family member of someone with dementia was to visit a dementia unit and practice speaking to the folks you meet there. She suggested that with these people – strangers to you – you get what you see, with no past experiences or expectations to color your view. You get what you see now, here and today.

Thinking about these two different perspectives may help family members. If the perspectives are carefully merged together, you will really have the ideal situation. You, as a family member, will know the inside, the life and history of your loved one, so that the approach is always personalized. But you will also understand that the person will not show their true self in the same way as they did before, due to the symptoms of the disease.

Adopting a bit of the “outside” perspective can help you step out of the past and into the now, so that you can understand your loved one’s forgetfulness, mistakes, and sometimes even anger. You will be able to accept and approach the person for who they are, here and now, while honoring and respecting who they were.

And for any professional caregivers reading this article, our challenge is to do just the reverse. Our “outside” perspective cannot stay that way exclusively. We have to get to know the inside of the person, through photos, stories from family, memorabilia the person has collected, etc. so that we also get to that ideal place in the middle : accepting and approaching the person for who they are, here and now, while honoring and respecting who they were.

Monica Heltemes is a practicing occupational therapist and owner of MindStart™. MindStart designs hobby-style items, such as games and puzzles, specifically for persons with memory loss. They keep persons with dementia active, while giving support to caregivers, and are quick and easy to use. Visit MindStart (Activities for Persons with Memory Loss) to learn more.

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Original content Bob Monica Heltemes, the Alzheimer's Reading Room