Planet Alzheimer’s

 

images-1How many of you have struggled with Alzheimer’s in a parent or spouse?

I know, from my own journey with my mother, that it can be a horrific experience watching a vibrant and capable human disappear, day by day, before your eyes.

Equally painful is the sense of helplessness … the uncertainty as to how to care for and comfort someone whose emotional and intellectual needs vary from day to day … whose behavior shows no discernible pattern or logic… who “acts out” for no identifiable reason.

Thus, it was reassuring to learn, at a recent seminar in Des Moines as part of the “Embrace Aging” series, that it is possible to make everyday life quite manageable for both dementia victims and their caregivers.

The presenter was Chuck Wurth, a Managing Partner of several retirement communities in the Midwest designed specifically for dementia patients

Living in The Eternal Present

According to Wurth, the loss of memory causes its victims to live in an increasingly eternal present.  As a result, they lose the learned knowledge of cause-and-effect … the memory function that tells us what steps to take to achieve the outcome we want. For example, a dementia patient who is cold may no longer make the connection between getting warm and putting on a sweater or turning up the thermostat.

According to Wurth, dementia patients typically “act out” because they don’t know how to express their needs and/or what to do about it. In his view, meeting the needs of Alzheimer’s patients can be pretty easy … but only if you can figure out what that unmet need actually is.

One approach that Wurth suggested was to take the time … often significant amounts of time … to actually talk to the patient. He offered four checklists—medical, physical, social, and “caregiving”— to prompt specific questions you should to ask in order to discern what the patient needs. “How are you feeling today” just isn’t going to get you the information you need.

Rules of Planet Alzheimer’s

Wurth also believes that the social and caregiving needs of an Alzheimer’s victim are as important as the medical and physical ones: loss of memory does not eradicate the need to be accepted, respected and loved.

Wurth praises the approach developed by Candace Stewart in Welcome to Planet Alzheimer’s.  Stewart uses the metaphor of a different planet, where the language and the rules are different from our everyday world. To communicate with an Alzheimer’s victim, you need to learn their rules:

  • You are not who YOU think you are — you are who THEY think you are
  • Logic and reason do not exist … follow the rules of improvisation and go with the flow
  • Nothing is gained by arguing
  • YOUR truth and THEIR truth are very different … accepting their truth is not the same as lying
  • Never take anything personally
  • Have no expectations
  • Take advantage of the shuttle back to earth at all times … you need to have your needs met as well.

To me, the rules of Planet Alzheimer’s sounded much like interacting with a young child.  According to Wurth, however, you cannot treat dementia  victims like children. They are adults with adult needs, but adults who are have forgotten many of the lessons they once learned.

Wurth insists that caregiving for a friend or family member with dementia can be a rewarding experience—but it takes a very different kind of patience … and a frequent return to the metaphorical planet earth.

If you would like to download Wurth’s four checklists, click here.

Comments

  1. Terrific post, Mary!
    I never thought about it this way before, but Planet Alzheimer’s is a perfect way to think about it.
    In one of my favorite Star Trek: Next Generation episodes, Capt. Picard is stranded on a planet with a man from another planet. Picard finally realizes that the man’s language is based on metaphors. Once he understands this, even though he doesn’t really know the stories, they can work together to get off the planet. From what you say, it’s kind of like that with Alzheimers, you have to realize the person with the condition”is living in the eternal present,” as well as the other points you mention above, so that you can “work with” the afflicted person instead of working against him or her.

    • Mary Gottschalk says:

      Merril — my mother died of Alzheimer’s and overall I think she was well cared for in her last years — well cared for in the sense of avoiding unnecessary anxiety and unmet needs. But I would have handled so many things differently if I had had the benefit of this lecture before instead of after.

  2. I know the rules of Alzheimer’s by heart, but I like the reminder I see here: these patients live in the “eternal present.”

    My aunt’s gerontologist labeled her as an Alzheimer’s patient even though her pacemaker prevented the brain scan that would prove a positive diagnosis. At the very least, she has a form of dementia, but can still carry on a conversation. Over the phone, I always identify myself as Marian from Florida. A few days ago, she sounded amazed that I now live in Florida, where I’ve been for almost 49 years. I am keeping a journal of sorts with snippets of conversation. For now, her memory is scattered but her personality is intact. Here’s a quote from Ann Napoletan summarizing my thoughts: “When you watch helplessly as the person who has been your rock literally loses her mind before your eyes, there’s a certain naivete about life that is stripped away. Mortality becomes very real and all the things you’ve taken for granted for a lifetime are suddenly called into question. Innocence is lost forever. That is Alzheimer’s.”

    • Mary Gottschalk says:

      Marian … I love the image of the “memory is scattered” but her personality is intact. You have captured the essence of Wurth’s presentation … Alzheimer’s patients are the same “people” they always were. It reminds me of my experience with 4th graders … available, creative, and open — able to appreciate their environment … but limited experience with what is socially or technologically or religiously … or …or …or appropriate.”

  3. Timely post, Mary. My dad is dealing with dementia…and he is slowly slipping from our world. Your thoughts and advice are very helpful. Thank you, thank you.

    • Mary Gottschalk says:

      Gwen … I’m so glad this is helpful … you have my sympathy and empathy …. it is a heartbreaking time.

  4. Excellent post, Mary. And thank you too for offering the link to those checklists.
    The metaphor of being non a different planet is so apt. As is the “eternal present,”
    unlike dealing with my autistic step-son in that way. Limited ability to appreciate a future
    or recall a past. And always offering me a lesson of some sort.
    This series offers a unique and valuable service. Thank you.

    • Mary Gottschalk says:

      Janet … thanks so much for those lovely kind words … and for your lovely gift of spring on the Virginia shore

  5. Thanks Mary. This is an excellent article. I never thought of it that way before. I wish I had read this when my mom was going through it.

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