Alzheimer’s as an Opportunity to be cared for and Share the Role of Time Keeper

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An excerpt from A Deeper Perspective on Alzheimer’s and Other Dementias: Practical tools with Spiritual Insights

Flossie rode the wagons west! In 1987, when I started working with this particular resident, she was 105 years old. She had been born in 1882. Imagine the changes she had seen in her lifetime.

At 18, she witnessed the turn of the century, and at 32, the outbreak of World War I. When she was 52, she experienced the Depression, and at 63, World War II. She probably thought that by the time she reached 80 years of age, she would no longer grace this life, yet here she was in 1987, still among us. She was in amazingly good health — somewhat hard of hearing, with slight visual impairment — and looked like a 60-year-old, her skin soft and smooth and on her head beautiful, thick, snowy white curls. She was at times delusional.

We don’t need to bury time capsules and dig them up later to interact with the past — we just have to look around and catch it from the timekeepers around us. Literally, if you draw in close, you can feel the sparkling dust of other times swirling around such people. What gems, what richness! My bias is evident: I believe everything that gets old gets better.

Experiences
Where do our experiences go? Do they convert through a series of rhythmic processes in the brain to memory, a highly condensed storage area? Or are we living products of our time? I always find it fascinating to experience people who are somehow stuck in a certain time frame. It might be something as simple as a hairstyle not changing for 40 years, or furniture in a house being unchanged since 1962. Is it finances? Is it because of a certain focus of consciousness, which felt comfortable in that era and continues to live there?

Flossie had memory loss in the clinical sense. Her short-term memory was very short.

Her ability to recall new information lasted about 10 minutes, but certain things in her long-term memory she remembered clearly and could speak of them vividly. She also could be delusional and hallucinate. In other words, from an Alzheimer’s perspective, she would be re-experiencing the areas of memory she still retained and would be reliving them, projecting them on the here and now.

Occasionally, this proved to be especially exciting to her and those around her. She would be calmly sitting in her wheelchair and she would physically jump in a startle response and whoop, crying, “Whoa! Hold on! These horses are scared! They bolted. Oh, saints above, we’re gonna lose everything in the wagon. Whoa! Hold up! Uncle Bob’s comin’. Come on, come on, catch up! Grab ol’ Baron! Get ’em to slow. That’s it, that’s it.”

All of this was being physically played out by Flossie as she jerked about in her wheelchair, holding on to her invisible reins for dear life until the horses finally slowed. Flossie had come west on a wagon train to Colorado. There was never any particular cue we could figure out that would prompt these active recollections, but we were along for the ride and got glimpses of the life of many years ago brought vividly into the present.

A common purpose
Newscaster Tom Brokaw’s book The Greatest Generation suggests what is special about the generation that came of age during the Great Depression and the Second World War was that it was not only united by a common purpose but common values: duty, honor, economy, courage, service, a love of family and country– and, above all, responsibility for oneself. He tells the stories of many men and women, heroes and heroines, whose everyday lives reveal how this generation persevered. Without whining or complaining or feeling entitled, they applied themselves to create interesting and useful lives and build the modern America we have today.

In working with these elders, I find that the values that Brokaw mentions remain even when dementia is present. I have worked with many elders who want to report for work every morning. They feel responsible for their families and have a dignity and steadfastness that is unwavering, a belief in hard work, applying oneself to solve problems, a kind of optimism about life, and moving forward through difficulties. Even when someone expresses their gratitude nonverbally, in very late stages of this disease, you can feel the deepest parts of the elder still being conveyed.

In their presence
This is part of the reason why I find the work I do so incredibly rewarding. I get to be in the presence of these great individuals, who are often humble and modest, and in the time we spend together, soak up some of the greatness that defined them. I hope their example is contagious. In fact, at times I find myself feeling displaced, as if I should have lived then instead of in the strange times we live in now. This may be an additional element to the sense of kinship I feel.

I don’t typically perceive chronological age as relevant in my day-to-day dealings with residents. At any given time, a person may respond and react from, say, their 26-year-old, 40-year-old, or 6-year-old self, but this may change from moment to moment. My job is to stay fluid enough inwardly to know where we are; I do not use the dear etched wrinkles or age spots on the outer package as a guideline. It is one of the gifts of Alzheimer’s that chronological age is really irrelevant.

The other gift of interactions in this setting is that I am often aware of the progress that has been made in modern times with respect to our freedoms and biases. Some of what happened in the past was not optimal. Take women being limited in their job choices. I have worked with many female teachers and nurses, and years ago, there was some strange perception that if you married you could not continue working and would need to raise your family.

Honoring our elders with compassion, appreciating the good and the not so good in this process, we have frequent opportunities to bring to bear the best of ourselves. We have the chance to manifest gratitude and appreciation for those who went before us, who created the foundation of our lives, and to honor them.

This disease peels back layers of artifice and gets right to the nitty gritty of any issue. It demands our constant focus and attention. It brings out strengths in each of us that we didn’t know we had and highlights areas where we still have farther to go. In the deepest sense, the elders we care for allow us to have this experience.

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Megan Carnarius, R.N.
Megan Carnarius, R.N., an Alzheimer’s specialist, is known for her warm human touch in working with people with dementia and those who love them. Trained in Europe and the United States, she has international perspective and 25 years’ experience in designing and running memory care settings. She started consulting in memory care design in 1996 and continues to assist owners with building designs as well as program and operational development. Megan also served on the Alzheimer’s education committee for 15 years. She is a sought-after family consultant, professional trainer and lecturer.

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