Being with someone with Alzheimer’s

*** Time for this post?  Reading…5 minutes. Viewing…11 minutes. Practising…until it becomes automatic.

A couple weeks ago, I wrote about being with a person who is dying. Mostly it was about what to say and not say. The same questions arise when visiting, or living with, a person who has dementia. What to say? What not to say?

I’ve known two people who developed dementia. In the old days, we had such good conversations! When that was no longer possible, I stopped visiting. I wish I’d thought of researching how to be with someone in that state, instead of abandoning them.

Engaging with dementia…

In the video below, improv artists Karen Stobbe and Mondy Carter share how they use the guidelines of improvisation to break through conventional caregiving techniques and open up new worlds for persons with dementia. Here’s their story from the TEDMED website.

Karen was working as an actress, writer instructor and theater improviser when her father was diagnosed with Alzheimer’s disease. Being with her father in the days leading to his death, Karen was struck by the surprising similarities between improvisational acting and caregiving for persons with dementia.

Combining both worlds, Karen created a workshop and training guide for dementia caregivers based on the rules of improvisation. Together with her husband, actor and improviser Mondy Carter, Karen wrote and performed the show “Sometimes You Gotta Laugh,” an educational and entertaining take on Alzheimer’s disease, caregiving, humor and stress.

She and Mondy live in North Carolina with their daughter Grace and Karen’s mom, Virginia, who also has Alzheimer’s disease.

Guidelines from Improv…

  • Say “Yes, and…”
  • Agree, don’t deny.
  • Accept offers and gifts.
  • Be specific.
  • Listen fully.
  • Accept the reality given to you, and step into their world.
  • Go with the flow.
  • Share focus; give and take.
  • Silence is powerful.
  • Commit 100%.
  • Be in the moment.

As they point out, this approach is not the solution for all situations that arise when you’re caring for someone with dementia. But in their experience, it goes a long way to help find connection, to have relationships, and for everyone to have a better quality of life.

The guidelines in action…

“Who is this music?” asked Virginia.

“The Beatles,” replied her teenage granddaughter Grace.

“Oh yes, I dated them,” Virginia said.

After a split second pause, “Oh, what was that like Grandma?”

This example leads off an article from Home Care Assistance that elaborates on the guidelines in case you’d like them in writing,

More about this approach…

And what if it were you?

If this has got you thinking about what if you end up with dementia, here’s a link to the dementia directive form I introduced in a previous blog. Developed by Dr. Barak Gaster, this directive is worth considering as an addition to your basic directive.

Dementia presents a unique situation because it can take 5 to 20 years for the end of life to arrive. You might want to give thought to the kind of medical care you would want at various stages if you were to develop worsening dementia. For more about Dr. Gaster and why he thinks this is important, check out this article in the New York Times. In part, he says…

The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state,’” Dr. Gaster said. “Most of the time, they apply to a person with less than six months to live. Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious.

I wonder…do you have any thoughts or experience to share ?

A Revolutionary View of Alzheimer’s

Albert Einstein is frequently quoted for saying that the definition of insanity is doing the same thing over and over again and expecting different results. Much of what goes on in medicine fits this definition. Researchers and practitioners go around in circles, trying small variations on the same approach, and not finding the results they hope for.

The issue is, all of the variations are rooted in the same mindset. In medicine, the prevailing mindset is that the solution to any condition is a magic bullet in the form of a pill to correct the issue. It’s an outdated attitude that worked in the days when penicillin was discovered to kill the bacteria that caused pneumonia, rheumatic fever, blood poisoning and other infections. Penicillin was the magic bullet that ushered in the age of antibiotics at a time when untreated infections were a major cause of death.

However, the landscape has shifted. Today’s health issues are primarily complex chronic conditions. Think heart disease, diabetes, metabolic syndrome, cancer, chronic fatigue and Alzheimer’s. Despite the enormous amount o money and effort put toward finding the magic bullet, it hasn’t happened.

The prevailing medical view of Alzheimer’s is a good example of stuck thinking.

Doctors are taught that once a person shows signs of Alzheimer’s, continued deterioration is inevitable. Drugs might be able to slow the progression, but there is absolutely no possibility of reversing the condition.

As the title of this post suggests, that belief has now been proven to be untrue. Continue reading

Something to try…for a general tune-up

In the spirit of being the director of your own study-of-one, here’s an experiment for you. This activity takes about 3 minutes and engages parts of your body that improve energy flow and oxygen to the brain. According to Dr. David Jockers, it has dramatically improved the health of many people with ADHD, dyslexia, anxiety, depression, brain fog and dementia.

It’s a fast, simple, and drug-free method of improving brain function, according to the doctor interviewed in the following news report.

The next video is Dr. David Jockers demonstrating how to do SuperBrain Yoga. He mentions that a person with limited mobility can make adaptations. They aren’t demonstrated, so here’s his description from near the end of his article. This uses visualization in the same way that high-performance athletes do.

Science shows that visualizing a technique can actually result in positive benefits as if your body physically performed an exercise or experience. …adults with limited abilities to squat should sit in a chair with feet grounded and hands [holding earlobes the same as if standing]. While performing the same breathing patterns, visualize the exercise…

I did this every day for about 3 weeks and didn’t notice cognitive difference, but my knees sure improved, even though they emphasize this is not about exercising muscles. However, in my world, that’s a substantial benefit because I haven’t been able to squat down very far for years. At the 3-week mark, I got a cold, didn’t feel up to doing it,and hadn’t picked it up again. Prompted by writing this post, I did it again and was shocked how much of my knee mobility I’d lost. That’s good enough incentive to keep me going.

So…I’m curious. If you try it, what happened for you?

Brain on Sugar

This photo is not me having a bad-hair day. It’s how things felt inside my head before I stopped eating sugar and greatly reduced other carbohydrates. I managed to keep functioning and sometimes smiling, but it was hard work. And I’m not sure I fooled everybody, although I tried.

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Within a few months of eating no sugar or grains, I realized my brain was feeling like this…

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…and I began smiling more, even in a Canadian winter.

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I’m not the only one…

A couple weeks ago, I posted about new research showing that Alzheimer’s can be reversed. The success of the program comes from using a whole-system approach to discover the causes of disturbed brain function in each individual. To do this, they look at 36 factors in the areas of diet, environment, toxins, activity, and stress. Sugar is one of those factors. Continue reading

What if…Alzheimer’s can be reversed?

In June of 2016, Science Daily published a report describing initial results of a study underway at the Buck Institute for Research on Aging. The title: “Pre and post testing show reversal of memory loss from Alzheimer’s disease in 10 patients.” It goes on…

This is the first study to objectively show that memory loss in patients can be reversed, and improvement sustained, using a complex, 36-point therapeutic personalized program that involves comprehensive changes in diet, brain stimulation, exercise, optimization of sleep, specific pharmaceuticals and vitamins, and multiple additional steps that affect brain chemistry.

Alzheimer’s reversed? Yes!

This is stunning in a healthcare culture where “everyone knows” that Alzheimer’s is a sentence to steady decline over a long period of time with no hope of recovery. Continue reading