“Survival Skills for Stressed Out Caregivers” – the STOP process

Donna Thomson is a caregiver who lives in Canada and writes a blog called “The Caregivers’ Living Room” (donnathomson.com).  This post contains advice from an aboriginal Canadian, Caleb Musgrave, who teaches wilderness survival skills.

Here’s an excerpt:

“Caleb Musgraves says, ‘Survival in all environments is all the same thing.  It’s 90% psychological.  It’s all about how your mind deals with certain stresses at certain times.’  When circumstances become hellishly hectic and challenging, Musgrave insists that in order to survive, you need to slow down and process what’s happening. So, what’s Caleb Musgrave’s secret to survival?  It’s the process called STOP – Stop, Think, Observe, Plan.”

Robin

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www.donnathomson.com/2017/03/survival-skills-for-stressed-out.html

Survival Skills for Stressed Out Caregivers
Wednesday, 15 March 2017
The Caregivers’ Living Room – A Blog by Donna Thomson

This is a reprint of a post from a couple of years ago. I think it’s worth publishing again, because the lessons about stress management from First Nations peoples are so helpful.

I’ve just come from our family cottage in the north woods of Quebec.  It’s peaceful there – a place for reflecting and remembering.  My Nana built our cottage in the 1920s and my memories are of her making my toast on the woodstove with the sunlight dancing through the wood-framed window.

But the woods can be scary sometimes.  Once, I got lost.  I went for a walk by myself and followed a path I didn’t know.  I was surrounded by unfamiliar wild meadows and swamps I had never seen.  Just the birds were my company and suddenly, I felt afraid.  It took me four hours to find my way home.  A caregiving life can be like that.  One day, everything seems normal and calm.  Suddenly with a new diagnosis, we are lost without a guide.

Recently, I heard a wilderness survival expert on the radio.  Caleb Musgrave is an aboriginal Canadian who runs a company called Canadian Bushcraft.  He teaches professionals how to survive in the wild.  Apparently, these skills easily translate to the chaos of trading floors and the frenetic pace of high tech startups.  I sat down and began to listen more intently, thinking, “maybe there is something here for caregivers.”

At about minute 23 in this episode of Definitely Not the Opera on CBC Radio, Caleb Musgrave offers his advice on how to move forward when things go terribly wrong.  “Survival in all environments is all the same thing.  It’s 90% psychological.  It’s all about how your mind deals with certain stresses at certain times.”  When circumstances become hellishly hectic and challenging, Musgrave insists that in order to survive, you need to slow down and process what’s happening.

So, what’s Caleb Musgrave’s secret to survival?  It’s the process called STOP – Stop, Think, Observe, Plan.  Stopping is the first key element in Musgrave’s stress survival training.  “Breathe, perhaps drink some water – your brain functions better with water,”  he advises.  Observe the situation.  What are the stressors?  Look around to see what might help you in your situation.  Then, plan.  “Do I ask someone to help me?  Can I manage this situation on my own?”  Musgrave says that asking oneself all these questions helps to alleviate stress and lay the groundwork for helpful action.

Our aboriginal cultures can teach us many valuable lessons about family, survival and resilience.

 

“Square patches of light remember you” – reflections on grandmother with PSP

This beautiful remembrance, “Square patches of light remember you,” was published in the June 13, 2017 issue of Neurology journal.  These reflections are by Bronte Nicole Ficek, whose grandmother Lola had progressive supranuclear palsy (PSP).  See:

www.neurology.org/content/88/24/2333.full

“Learning to live with Lewy” (Zionsville, Indiana)

Here’s another article from a local newspaper in Indiana about a couple coping with Lewy body dementia (LBD). The article features a two-minute video with Mary Milberger, the caregiver/spouse. The article notes: “From 2012 until November 2016, Tom [Milberger] was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.” Based on these problems, Mary came up with the LBD diagnosis.

Robin

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www.timessentinel.com/news/local_news/video-learning-to-live-with-lewy/article_ea1bf58c-fedb-5dfd-bc63-a8d0a693e642.html

Learning to live with Lewy
One disease alters life for local couple
By Tilly Marlatt
Times Sentinel (Zionsville, Indiana)
Jun 28, 2017

His hand visibly shakes as he struggles to take a sip from his glass of tea. Removing his glasses takes longer than normal. His bottom lip quivers as he struggles to find words. At the age of 71, tremors may be written off as a sign of old age, but for Tom Milberger of Zionsville they mean much more.

Tremors are just one symptom of Lewy Body Dementia. Hallucinations, loss of facial expressions, falling, and a lack of self-control are all other symptoms he has experienced since November 2016 when he was officially diagnosed with Lewy Body Dementia.

Milberger’s tremors are visible, but they are simply outward disguises of his real struggle. Lewy Body Dementia is similar to Alzheimer’s, but varies in the way that it impacts the whole brain, not just one part.

Milberger’s joking mannerism and broad smile doesn’t tell the full story of who he is or who he was. Milberger spent 20 years in the U.S. Army before becoming a project manager with T-Mobile. He became the first person to retire from the company in 2008, prior to the onset of LBD.

“I’m really good at giving hand shakes,” he jokes. With constant tremors caused by the Lewy Body Dementia, or LBD as it is often referenced, giving a handshake seems to be one of his few normal gestures remaining.

Most nursing homes throughout the state of Indiana will not accept a person with LBD.

Luckily, Tom Milberger has a dedicated caretaker by his side, his wife of 37 years, Mary.

She sits at their dinning room table with her iPad, and a yellow folder, overflowing with pamphlets, charts, and other resource guides for becoming educated on LBD. The disease is widely undiagnosed. Tom was undiagnosed at the onset, but his wife knew there was more going on. His early symptoms originated back in 2012, but Tom’s doctor failed to diagnose him.

“It’s very important that they [LBD patients] do get told this diagnosis, and not be labeled,” Mary Milberger said.

From 2012 until November 2016, Tom was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.

“He was hiding his wallet in his pillowcase at night,” Mary Milberger said. “That’s when I spent many nights on the wonderful iPad studying different symptoms. Only then did I realize he had every symptom of Lewy Body Dementia.”

The Milbergers then went to meet with Dr. Jared Brosch at the Indiana University School of Medicine. After meeting with Dr. Brosch, he told Mary Milberger that her “arm chair diagnosis was right,” as Milberger recounts. LBD patients can never have a definitive diagnosis. Only during autopsy can it be confirmed. Dr. Brosch is leading a study on patients with LBD, in which Tom Milberger is enrolled.

 

“Caregiver Survival Tips” by an MD

These “caregiver survival tips” were written by a primary care physician. The tips include:

* reward yourself
* confide in your doctor
* accept help
* be open to change
* trust your gut
* seek support
* stand up for yourself
* get connected

The tips were posted to a caregiving blog called “The Caregiver’s Voice” (thecaregiversvoice.com). Someone in our local support group shared a link to this blog with me today.

You can find the blog post here:

thecaregiversvoice.com/tips-caregivers/caregiver-survival-tips/

Caregiver Survival Tips
12 Apr 2017
Romilla Batra, MD at SCAN Health Plan
The Caregiver’s Voice

Robin

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin