Wednesday, September 4, 2019

Bridge Magazine Article with Our Story

HomeBridge Magazine 

                             Michigan Health Watch          July 29, 2019

Alzheimer’s in Michigan: The coming storm 

Wayne Goates visits his wife Kristie, almost every day in a Kentwood nursing home.
She is in the final stages of Alzheimer's. (Bridge photo by Ted Roelofs)

Michigan Health Watch is made possible by generous financial support from the Michigan Health Endowment Fund, the Michigan Association of Health Plans, and the Michigan Health and Hospital Association. The monthly mental health special report is made possible by generous financial support of the Ethel & James Flinn Foundation. Please visit the Michigan Health Watch 'About' page for more information.

KENTWOOD—Just about every morning and evening, Wayne Goates makes his way to visit the woman he fell hard for in college. From all outward signs, she has no idea who he is.

“The commitment and the romance is still there,” Goates says of his wife, Kristie, who was diagnosed with Alzheimer’s 13 years ago. 

Conservatively, Goates figures he’s put in at least 20,000 hours tending to his wife in the years since her diagnosis. She has been in a dementia care wing of a Kentwood nursing home nearly seven years, at $6,500 a month, with the total bill now running past $400,000. 

“I have some investments and a pension and Social Security,” said Goates, 72, a retired school administrator and, like his wife, a member of the post-World War II baby-boom generation.  “Little by little, the savings are going away.” 

Related: How Michigan can prepare for the coming Alzheimer's crisis

And yet he considers himself fortunate, in part because his Mormon faith tells him he and Kristie, 68, will be reunited as their whole selves one day.

“I have it better than most,” he said one evening, as he spoon-fed his wife thickened apple juice. Kristie sat in a wheelchair in a sunlit sitting area of the nursing home. Her eyes briefly fluttered open for a time, but with no apparent recognition of her husband or surroundings.

Wayne & Kristie Goates, shortly after she was diagnosed with  Alzheimer’s 13 years ago. 

The cost of Alzheimer’s in Michigan

The number of those living with Alzheimer’s is expected to rise from 180,000 in 2018 to 220,000 in 2025. Experts say its toll will only grow.

·         517,000 family caregivers for Alzheimer’s patients in 2018

·         589 million hours of uncompensated care

·         $7.4 billion value for uncompensated care

·         $1.4 billion in Medicaid charges

·         More than $5 billion in Medicare charges

·         4,428 deaths in 2017

Source: Alzheimer’s Association

Goates acknowledged the strain “can make some people bitter. This can be devastating financially. For some people, it absolutely overwhelms them.”

In a state that’s aging faster than the rest of the nation, that’s likely to be the case for alarming numbers of aging Michigan baby boomers – born between 1946 and 1964 – and their families.

According to the Alzheimer’s Association, a national advocacy group, the number of Alzheimer’s patients in Michigan older than 65 is expected to climb from 180,000 in 2018 to 220,000 by 2025 – a jump of nearly 16 percent and 40,000 people in seven years.

……. A significant portion of the article about Alzheimer’s in Michigan deleted …….

For Wayne Goates and his wife’s family in Kent County, Alzheimer’s has been a relentless destroyer. That stretches back three decades to when the couple lived in Oregon, as he and Kristie tended to her father in the last grim years of his life with Alzheimer’s.

Kristie’s family would learn it is among a small percentage of those with Alzheimer’s with a gene mutation known to cause the disease. She has a younger brother and sister also diagnosed with Alzheimer’s.

Just over 13 years ago, Wayne began to notice changes in Kristie.

“It was the location of things.  She was going to a chiropractor 25 miles away and she asked me to draw a map.  A few months later, she wanted me to take her places.  Later, she did wander off a time or two.”

As Goates continued his work as a school administrator, he dedicated more of his time in care of Kristie following her 2006 diagnosis.

By 2009, he cut his work to half time as he put in nine hours in the afternoon and evenings to care for Kristie.

Following his retirement, that care schedule grew to 12 hours or more, seven days a week. In 2011, they moved to Grand Rapids to share a house with one of their daughters and her husband. He recalled a phase where Kristie restlessly paced most of the day and he had to feed her while she was standing up and pacing.

After suffering seizures and losing her mobility, Kristie entered the nursing home in 2012. Wayne said he continued to spend about three hours a day with her, feeding her breakfast, visiting her, and tucking her into bed at night.

He has bittersweet memories of a particular morning about four years ago.

Goates recalled that he kissed Kristie’s forehead after helping feed her breakfast, then looked back as he walked away. Kristie managed to utter what sounded like the beginnings of his name, “Way…”

It was the last verbal communication he can recall.

In the evening, he often reads her written memories from what he recalled and what he’s collected from family and friends. That stretches back to the time they met at Brigham Young University and the summer they spent in a forest lookout tower in the mountains of eastern Oregon just after their marriage in 1973. It was a job he held each summer as he worked his way through college.

“I finally had someone I could share the sunsets with, watch the deer approach early in the morning and see the moons of Jupiter. The sky was so dark you could see them with binoculars,” he recalled.

In the meantime, he said he tries not to dwell on what could be in store for his two daughters.  By his calculation, their chance of getting Alzheimer’s hinges on whether they inherited a particular gene from him or from their mother. 

“It’s 50-50,” he said.

As for Kristie, Wayne said he does not consider their relationship to be over. 

“It may sound corny,” he said, looking over at his wife, “but I consider my care for her courtship for the hereafter.”

Monarch Butterflies and Migrations



Monarch Caterpillar Becoming a Chrysalis 
I’ve had three inspiring butterfly experiences during this past month.  The first was while with my wife, observing the hatching of a dozen butterflies in the memory care unit where she resides.  Seeing the transformation of crawling caterpillars into mummified cocoons, and then the emergence of delicate butterflies with wings and the ability to fly, is to witness an incredible miracle which is beyond our comprehension or ability to understand or explain.
Monarch Emerging from a Chrysalis
Monarch Butterfly I Found


Between watching the butterflies hatch and their eventual release, the second event occurred.  While walking one morning to assist Kristie, I saw a Monarch butterfly lying along the sidewalk, but left it because I had nothing with me to carry it carefully.  I actually forgot about the butterfly and was surprised to see it again in the evening after helping Kristie to bed.  I gently put the butterfly in my baseball cap and brought it home.  It is astonishing to me that this Monarch butterfly was in such pristine condition and had remained in the same location all day despite gusting winds, numerous people passing by, and possible predators.



Photo While Walking Mackinac Bridge
It was the third experience, however, which fascinates and intrigues me most.  On Labor Day I walked the mighty Mackinac suspension bridge which is 5-miles long and rises 200 feet above the waters of Lakes Michigan and Huron.  Actually, I only walked half of the 5-miles and then returned the way I came.  On my return trip and while standing under the 552-foot south tower, I happened to look up and was flabbergasted to see a butterfly about ten feet above me in the air flying across the bridge.  I estimate the south tower to be about 3 miles from the north shore and two miles to the south shore.  It is stunning, almost inconceivable, that something as tiny and delicate as a butterfly could, and would, fly across such a vast body of water while encountering wind gusts of 15-miles an hour or more.

I am not certain whether what I saw was a Monarch butterfly, but I have talked to people who have seen them in swarms as they migrate over land along Lake Michigan; and this is the time of year for Monarchs to travel through northern Michigan, as they fly 3,000 miles to hibernate central Mexico. 

Kristie Neilson as a Kindergarten Student in Pacific Grove, CA

Sixty-four years ago, my wife began kindergarten at the Lighthouse Elementary School which was right across the street from the Pacific Grove, California Monarch Butterfly Sanctuary, where the Monarch butterflies west of the Rocky Mountains return each fall.  She was one of the kindergarten students who led the annual Butterfly Parade during the first week of October 1955.

I love the 4-minute video below "Migration: A Yearning for Home" and its message that we as humans are on a migration as we seek our heavenly home.  This becomes very poignant for me as I consider Kristie's journey through life, and deem her Alzheimer's and eventual passing as a chrysalis phase, prior to being resurrected, as she ultimately emerges to make her way to her eternal home. 




---------------------------------------------------------------------------------------------------------------
Addition information regarding the development stages and yearly 4-generation migration of Monarch butterflies is available at https://www.monarch-butterfly.com/; where I copied the top two pictures.