Volunteer Spotlight: Sabrina Tunoa

sabrina tunoa

Name:  Sabrina Tunoa

Volunteer Role(s): MIM volunteer; event volunteer; working to become a support group facilitator

Years Active with the Alzheimer’s Association: <1

Professional Background: Administration; management; bookkeeper; and on track to graduate with my BA in psychology, minoring in gerontology from UCCS

Why I Volunteer: My grandfather was diagnosed with dementia and passed away in 2013. I was grief-stricken for many months as he was one of my absolute favorite people. I felt an extreme responsibility to become a helper to others, whether they are the affected or the loved ones.

My Favorite Moment/Experience as an Alzheimer’s volunteer: I volunteered during the Walk to End Alzheimer’s and met a woman who was diagnosed with Alzheimer’s disease and in the early stages. I had an emotional reaction, as did she, and I asked her if I could give her a hug. It was a beautiful, touching moment that I will never forget.

How I Make a Difference: I volunteer with the Alzheimer’s Association and am receiving education in line with my passion of helping those affected with dementia. I am excited for my future in this field!

Alzheimer’s caregiving is isolating – alone in a crowd of 16 million

Job opening: Position requires you to be on call 24 hours a day. Salary is zero. In fact, you will pay, on average, $10,697 per year to do a job that will negatively affect your own health, and may shorten your life. Average time on the job: 8 to 10 years, although some hold the position 20 or more years.

Sound too good to be true? That’s the job of an unpaid caregiver for a loved one with Alzheimer’s or another form of dementia. In 2018, there are nearly a quarter of a million Coloradans working in this job, among the 16 million people in the U.S. doing the same work for love, not for money.

November is National Alzheimer’s Disease Awareness and Family Caregivers Month, as proclaimed by President Ronald Reagan, whose wife, Nancy, became his caregiver when he was diagnosed with Alzheimer’s disease in 1994.

Following are a few interesting facts about those who are volunteer caregivers for loved ones living with dementia:

  • Most are women. About two-thirds of unpaid caregivers are women.
  • Women caring for women. Nearly two-thirds of those living with dementia are women.
  • 4 billion hours. That’s how many unpaid hours of caregiving were provided in 2017 to persons in the U.S. living with dementia by family and friends.
  • $232 billion. That’s the value of the hours of unpaid caregiving (average $12.61/hour).
    • That’s a lot of hamburgers. That unpaid caregiving value is more than 10 times the total revenue of McDonald’s in 2017 ($22.8 billion).
  • Depression is common. Between 30 and 40 percent of family caregivers for people with dementia suffer from depression compared with 5 to 17 percent of non-caregivers of a similar age.
  • A high-stress job. Nearly 60 percent of caregivers for those living with Alzheimer’s and other forms of dementia report “high to very high” levels of emotional stress, while 38 percent report “high to very high” levels of physical stress.
  • It could kill you. A Stanford University study reported that caregivers have a 63 percent higher mortality rate than non-caregivers, and 40 percent of Alzheimer’s caregivers die from stress-related disorders before the person for whom they are caring.
  • Double trouble. One in four respondents are “sandwich generation” caregivers, meaning they care for children under age 18 as well as an aging parent.
  • Experience not required. Half of all dementia caregivers (51 percent) report having no prior experience performing medical/nursing-related tasks, and often lack the information or resources necessary to manage complex medication regimens.
  • “No” is not an option. Survey respondents frequently said that they felt they had no choice in whether they could take on the caregiver role.
  • Highly educated. About 40 percent of dementia caregivers have at least a college degree, if not more education.
  • Not highly paid. 41 percent of caregivers have a household income of $50,000 or less.
  • Almost half tout the benefits. Despite the physical, emotional and financial strain, 45 percent of caregivers surveyed by the Alzheimer’s Association reported the experience was “very rewarding.”
  • Most commonly expressed concern: “Nobody gets it.” Alzheimer’s caregivers frequently state that others – particularly those who are not caregivers themselves – do not understand the pressures and challenges facing those who are on duty essentially 24 hours a day due to the unpredictable behaviors and sleeping patterns of the person with dementia.
  • The toughest choice. The majority of caregivers admit that the toughest choice they have ever had to make is deciding when they can no longer provide care for a loved one and it is time to move him or her to an assisted living facility.

Colorado-specific caregiving statistics

  • Nearly 250,000 unpaid caregivers in 2017 for 71,000 people living with dementia.
  • 282 million hours of unpaid care provided, valued at nearly $3.6 billion.

“Caring for a loved one with dementia is, in many ways, the most challenging job a family member or friend will ever undertake,” said Danelle Hubbard, director of Family Services for the Colorado Chapter of the Alzheimer’s Association. “For that reason, caregivers are the focus of a sizable portion of the services that our Association provides.”

Information, programs and services that the Alzheimer’s Association provides – all at no charge – to Colorado families include:

  • Educational classes on topics including (click here to find a class near you):
    • Know the 10 Signs: Early Detection Matters – If you or someone you know is experiencing memory loss or behavioral changes, it’s time to learn the facts. Early detection of Alzheimer’s disease gives you a chance to begin drug therapy, enroll in clinical studies and plan for the future. This interactive workshop features video clips of people with Alzheimer’s disease as a way to highlight the challenges they face every day.
    • Dementia Conversations – A workshop that offers tips on how to have honest and caring conversations with family members about going to the doctor, deciding when to stop driving, and making financial and legal plans
    • Effective Communication Strategies – Learn to decode verbal and behavioral communication with a loved one with Alzheimer’s or other dementias. Participants leave with strategies for meaningful connection with people in early-, middle- and late-stage dementia.
    • Healthy Living for your Brain and Body: Tips from the Latest Research – Learn about research in the areas of diet and nutrition, exercise, cognitive activity and social engagement, and use hands-on tools to help you incorporate these recommendations into a plan for healthy aging.
    • Legal and Financial Planning for Alzheimer’s Disease – This workshop, presented by an attorney who is a volunteer for the Alzheimer’s Association, is for anyone who would like to know more about what legal and financial issues to consider and how to put a plan in place.
    • Other classes include:
      • Understanding Alzheimer’s and Dementia
      • Living with Alzheimer’s for people with Early Stage Alzheimer’s and Care Partners
      • Living with Alzheimer’s: for Middle Stage Caregivers
      • Living with Alzheimer’s: for Late-Stage Caregivers
      • Living with Alzheimer’s: for People with Younger Onset Alzheimer’s
      • Understanding & Responding to Dementia-Related Behavior
    • Support groups composed of other caregivers.
    • Family care consultations.
    • The Association’s free 24/7 Helpline (800-272-3900), staffed by trained professional counselors available to answer questions, refer people to resources in their community, deal with issues that are vexing to the caregiver, and more. The Helpline is staffed by bilingual English/Spanish counselors, and translation services are available in more than 200 languages and dialects.
    • The Association’s website: alz.org/co offers a wide variety of information and resources.

To learn more about caregiving, find care resources and support, click here.

Volleyball team aces Alzheimer’s tribute

Montrose and Fruita VB teamsWhen Rick Edmondson was diagnosed less than two years ago with younger-onset Alzheimer’s disease at age 57, his sister, Shane Forrest, knew what she had to do.
The head volleyball coach at Montrose High School (MHS), Shane took a year away from the coaching position she’s held for the past 20 years to spend more time with Rick and his wife, Traci. And she spent her 50th birthday captaining his team, True Grit, in the Walk to End Alzheimer’s in Boulder, leading it to the highest family team fundraising total at the event.

While Shane has since resumed her coaching responsibilities at MHS, she isn’t done advocating for her brother by a long shot. Raising awareness of Alzheimer’s disease has become an important part of her mission, and she’s enlisted her students in the process.

“Go Purple” was the theme at Montrose High’s most recent volleyball match, and the entire school embraced the cause, adorning the halls with purple and inspiring people to divulge their own personal stories. Even the opposing team from Fruita High School showed up in their own purple shirts with ENDALZ on the back.

“Many MHS staff members have shared their stories with us about their mothers, their uncles and their friends, and the battles they waged with this ugly disease,” said Shane. “The stories are powerful, and I feel like we’re giving them a small way to remember and honor their loved ones.”

Shane’s volleyball team raised funds for the Colorado Chapter of the Alzheimer’s Association by selling purple shirts at the game, and she will be back in Boulder next August with Rick and Traci for the Walk to End Alzheimer’s.

Nearly 6 million people in the United States are living with Alzheimer’s disease, including 71,000 in Colorado. It is the No. 6 killer of people in the U.S., and the only leading disease without a prevention, treatment or cure. To learn more, go to http://www.alz.org/co or call the Association’s free 24/7 Helpline at 800-272-3900.

The cost of Alzheimer’s – it’s higher than you think

Connor Visser_opt

Alzheimer’s disease is stealing the memories and quality of life of nearly 6 million people in the United States. But that’s not all it’s taking.

The financial toll of Alzheimer’s and other forms of dementia is crippling. Sadly, very few families are prepared for the cost of care, or realize how little of that cost is covered by insurance.

Today, Alzheimer’s and other forms of dementia take $1 of every $5 in Medicaid funds to provide care for persons living with dementia. Since Alzheimer’s is the only major disease without a prevention, treatment or cure, and our country’s population is aging, those numbers will only get worse. If no cure is found by 2050, it is estimated that $1 of every $3 in Medicaid funds will go toward dementia care.

We are not prepared for retirement – or Alzheimer’s

But what about the financial impact on individuals and their families? Edward Jones Financial Advisor Connor Visser believes the vast majority of people are already unprepared for the cost of a healthy retirement. For those affected by dementia, the impact could be devastating.

Visser, who manages Edward Jones’ Superior, Colorado, branch, says that the cost of just one year’s care in a nursing home – estimated by the Department of Health & Human Services at $85,775 for a semi-private room ($97,455 for a private room) – already tops the $84,821 the average adult has saved for retirement*.

“The average nursing home stay is 2½ years, according to Health & Human Services statistics,” Visser said, “but it’s not uncommon for people to live in nursing homes for 5 to 10 years.”

That would mean the typical family with a loved one in a nursing home is looking at roughly $200,000 to $250,000 in nursing home charges, although those costs could approach $1 million in some cases.

Visser cited statistics from the Center for Retirement Research at Boston College which show nearly 40 percent of people over age 65 will require nursing home care.

Other care options also carry a hefty price tag

While many families opt for in-home care for their loved ones living with dementia, those costs can still be sizable, especially when considering that after diagnosis, people with dementia can survive as long as 20 years, although 4 to 8 years is more common.
The cost just for assisted living, which is a less intensive form of care, averages $45,000 per year, according to the Genworth 2017 Cost of Care Survey. In-home healthcare average $49,000 per person per year.

“It’s important to recognize that the Genworth study focuses on ‘basic costs’ of care,” noted Danelle Hubbard, director of Family Services for the Colorado Chapter of the Alzheimer’s Association. “The reality is that anyone living with Alzheimer’s who is in memory care will not be covered under the basic service rates, and the cost could well be double.”

Medicare isn’t the answer

“If people haven’t saved enough for retirement, they probably haven’t saved enough for long-term care,” added Visser.

And Visser has seen too many people surprised to learn that Medicare, which is the prime source of healthcare for people ages 65 and over, is not the solution for long-term care, such as nursing homes, assisted-living facilities and adult daycare.

“Medicare typically covers up to 100 days of short-term care and a portion of costs, and the stay must be related to medical care,” he said. “You must check a lot of boxes for Medicare to cover costs.”

Women carry a larger burden

  • Of the 40 percent of the population over age 65 that will spend time living in a nursing home, the Boston College research data shows that:
  • Nearly 75 percent of nursing home residents are women
  • Women over 65 require care for an average of 3 years (double that of men)
    66 percent of long-term care recipients are women (women live longer than men and typically don’t have a spousal caregiver)

“A couple’s retirement portfolio must care for both people, and the cost of care for one could affect the surviving spouse’s ability to live comfortably in retirement,” Visser said.

Insurance options

For those families that do not have the financial resources to pay out-of-pocket for long-term care, Visser believes the best approach is long-term care insurance. But he advises caution there too.

“I don’t recommend that people look for long-term care insurance until age 55 to 65, as it’s very expensive, but there are different options,” Visser noted. “There is traditional long-term care, hybrid insurance policies with a long-term care rider where people can use the death benefit as a long-term care payment, and others.”

Visser recommends that people talk with their personal financial advisor to understand the options, and that they discuss them early enough so that they can begin paying the premiums from their salary versus their retirement account.

“Even if you don’t anticipate needing nursing home care, it’s good to include it in your long-term strategy,” he said.

Hubbard also advises that families purchasing long-term-care policies understand the limits of those policies.

“Many long-term-care insurance policies will only cover 4 to 5 years of assisted living facility costs,” she said. “The reality is that many people outlive those policies and may need to move into a skilled nursing facility, personal care home or a Medicaid facility if the family is unable to assume the higher costs of care in an assisted living facility after the policy expires. This can lead to an additional transition for persons with Alzheimer’s at a time when they require a higher level of care.”

A sensitive conversation

Visser knows from experience with his clients that the long-term care insurance conversation is a tough one.

“When you start talking about preparing for the unexpected, it gets pretty sensitive,” he said. “People don’t want to bring it up, even with their spouse. It won’t be a fun conversation, but it’s an important one to have.”

Volunteers boost Alzheimer’s Association in Colorado’s mountain towns

IMG_1370_opt“Everybody can be great because anybody can serve.” That was Martin Luther King, Jr.’s approach to volunteering. Coloradans take that message to heart, and the Alzheimer’s Association volunteers in the Rocky Mountain communities are the best examples.
“It’s more than 250 miles from our regional office in Boulder to our office in Grand Junction,” said Amelia Schafer, executive director of the Colorado Chapter of the Alzheimer’s Association. “For us to provide services to families in the many mountain communities, we rely on our volunteers. And we are blessed to have some outstanding ones.”

Sandra (Sandy) Bainbridge of Frisco is one of those outstanding volunteers. A caregiver for her own mother during her nine-year journey with Alzheimer’s disease, Bainbridge serves as a volunteer in the Alzheimer’s Association’s speakers bureau to bring educational programs to towns throughout Summit County. She also supports the Association’s Boulder office (a mere 87-mile trip each way) in addition to her work on the Colorado Assisted Living Committee and the State Respite Coalition, not to mention working with Summit County Seniors to develop a volunteer respite companion program.

In her free time, Bainbridge is working with the Summit County Seniors board to mobilize the county’s 2,000 senior members to support the inaugural Walk to End Alzheimer’s in Eagle on Oct. 20. Scheduled to start at 10 a.m. at Brush Creek Park and Pavilion, 909 Capitol St., the newest Walk to End Alzheimer’s – Colorado’s 12th – has an ambitious $100,000 fundraising goal to support programs, services and research to find a cure for the only leading disease without a prevention, treatment or cure.

Summit County is the fastest growing retirement county in Colorado, and Bainbridge understands the need to expand awareness of services offered at no charge to families, like those provided by the Alzheimer’s Association.

“Awareness through education is important,” she said. “We do have a support group for caregivers (for those living with Alzheimer’s and other forms of dementia), but there is not an (Alzheimer’s Association) office in the rural mountain towns, so we depend on volunteers to make things happen. More and more Baby Boomers are retiring here, and we see a need to educate them and provide services.”

Bainbridge is one of the 1,000+ volunteers around Colorado who make it possible to extend the reach of the Association’s nearly 50 staff members. These volunteers help provide programs and services to the 71,000 Coloradans living with dementia, as well as the nearly quarter of a million unpaid caregivers – family and friends.

“Volunteers are the lifeblood of our organization,” said Schafer. “In fact, it was volunteers in the Vail Valley, including Chuck Smallwood and Gary Wicklund, who were the driving force behind establishing our new Walk to End Alzheimer’s in Eagle. Without them, we could never aspire to deliver our programs and services to every family in need in Colorado. They are heroes on the front lines of our fight to end
Alzheimer’s disease.”

To register for the Oct. 20 Walk to End Alzheimer’s in Eagle – or to make a donation – go to www.alz.org/walk.

Edward Jones’ Colorado commitment

Neil DraxlerAlzheimer’s disease destroys memories. The process can take years – sometimes as long as 20.

And given the enormous cost of Alzheimer’s care – whether in the home or in an assisted living facility – Alzheimer’s also can destroy a family’s lifetime of savings.

The challenge of helping the families of nearly 6 million people in the United States living with Alzheimer’s cope with this incurable disease – 71,000 of them in Colorado – makes for a natural bond between the financial services firm of Edward Jones and the Alzheimer’s Association. In addition to being the National Presenting Sponsor for the Association’s Walk to End Alzheimer’s, Edward Jones has deep connections with the Association throughout Colorado.

“The single greatest threat to financial security late into life is contracting a long-lasting disease that destroys a person’s savings and leaves them dependent upon their children or Medicaid,” said Neil Draxler, Broomfield-based regional leader for Edward Jones. “The most expensive of those chronic diseases, in both financial and emotional costs, is Alzheimer’s.”

“The thought of any of our clients’ nest egg going to pay for Alzheimer’s medical care, rather than to their heirs or to leaving legacies to causes that matter to them, is unacceptable to us,” said Draxler. “That is why Edward Jones is partnering with the Alzheimer’s Association to drive financial support for increasing the pace of research and enhancing vital care and support efforts.”

Draxler estimates that 40 percent of Edward Jones’ seven million clients are age 65 and over: the age range of greatest risk of this disease.

At the recent Walk to End Alzheimer’s in Boulder, an estimated 85 percent of Edward Jones’ staff participated in some way, whether by walking, fundraising, donating or volunteering on the planning committee.  They raised more than $22,000 for the Boulder event.

Across Colorado, Edward Jones has 38 employee teams with 220 participants that have raised nearly $42,000 thus far for 12 Walks to End Alzheimer’s, although those totals are certain to rise as Colorado’s Walks extend through October this year.

Nationally Edward Jones plans to have a presence at 600 Walks to End Alzheimer’s with goals of 5,000 teams with 30,000 participants raising $4 million.

“The commitment by Edward Jones’ staff in Colorado and across the United States is truly inspirational,” said Amelia Schafer, executive director of the Colorado Chapter of the Alzheimer’s Association. “Not only are they helping us raise awareness of the disease and funds to find a cure, but they are providing invaluable counsel to their clients to help them understand the financial challenges this disease poses.”

“For more than 95 years, Edward Jones has been in the business of building healthy relationships and helping our clients create and manage wealth,” said Draxler. “We often hear from clients facing Alzheimer’s that the disease does just the opposite – that it damages relationships with friends and family. And, in many cases, it destroys finances for both the individual facing the disease and her or his family.”

Family history motivates these Alzheimer’s volunteers

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Alzheimer’s disease makes a deep impression on those it touches. The Bowen Team members at Guild Mortgage understand that very clearly, and that’s what motivates them to raise funds for the Denver Walk to End Alzheimer’s.

Lead mortgage processor Andy Buchanan carries his beloved grandfather’s name, Carl, as his middle name. Andy got to know and love his grandfather before Alzheimer’s disease took its toll. And he recalls his mother driving 150 miles each and every weekend to care for her dad.

Marriage brought Andy more reminders of the devastation of dementia. He got to know both of his wife’s grandmothers before Alzheimer’s claimed them, causing both Andy and his wife to wonder about their medical futures.

In addition, Andy’s neighbor is currently living with Alzheimer’s, and his neighbor’s wife recently moved him to an assisted living facility to help ensure his safety.

“This is what drives me to raise as much money as I can,” said Andy. “My hope is that year after year, I can raise more and more funds and awareness for this great cause.”

Coworker Chuck Griffin, production manager at Guild Mortgage, also lost his grandfather to Alzheimer’s. He had served as an Army physician before the disease claimed him.

And team leader Mike Bowen, branch manager and mortgage banker, saw his father-in-law receive a dementia diagnosis two years ago. He’s observed the symptoms progress from slight memory loss to losing the ability to communicate effectively and difficulty in walking.

“I’ve witnessed a man struggling to hold onto his independence and, more importantly, his dignity,” said Mike. “This, to me, is the saddest and most impactful part of this disease.”

For these and other reasons, the Bowen Team is striving to be among the most successful teams for the Denver Walk to End Alzheimer’s, with a minimum goal of $5,000. In addition to their individual fundraising, Bowen is donating $25 per loan closed during their third quarter, and is encouraging all real estate agents who work with them to join their Walk team as well.

To join or support the Bowen Team, click here.

Volunteer Profile: Cindy Reagan

Cindy Reagan (1)Name: Cindy Reagan

Volunteer role(s):

Since 2008, I have been an art class facilitator for the Alzheimer Association, starting in a support group and presently in dementia units in various facilities.

I’ve just returned from my third time walking the Camino de Santiago pilgrimage route in Spain/Portugal as a fundraiser for the Alzheimer’s Association. Combined, I’ve covered 1,100 miles on foot, raising awareness about Alzheimer’s in my discussions with fellow walkers from all over the world. In my related blog and on Facebook, I shared my travels and stories about my MIM artists, and accepted donations for my Walk fundraiser. On the trail, one of the first questions asked is why are you walking, and it is amazing to hear how prevalent Alzheimer’s is throughout the world.

Years active with the Alzheimer’s Association:

I did my training in 2007 and began volunteering in 2008.

Professional background:

I was assistant art director for a city magazine, ran an in-house advertising agency and was the promotions director for a large manufacturing company.

After our second child was born, I began freelancing as a graphic designer, producing advertising materials for various companies.

Why I volunteer:

I began volunteering full-time 25 years ago. It feels good to possibly be able to make a difference in someone’s life. As a volunteer, I feel I am able to give quality time to another person. Often, I am able to give them all of my attention without dealing with time constraints. I lose track of time when I work with people with Alzheimer’s because we both get so involved with the painting or a story or just having a conversation.

My favorite moment/experience as an Alzheimer’s volunteer:

One of my favorite moments as an Alzheimer’s volunteer was working with a woman who was an incredible artist and was always interested in the techniques of painting. She was very dedicated to her work. Her memory would be sporadic at times, sometimes telling me stories about her son serving in WWll.

Once she painted a mountain scene that depicted a brightly shining sun. After she was finished, she talked for an hour about how today she could paint this scene because “a man’s load had been lifted from her shoulders and replaced with just a woman’s load.” She was smiling and said she was free. That shows just how powerful art can be in retrieving feelings that possibly made a huge difference in her life.

How what I do makes a difference:

With Alzheimer’s, I’ve watched a person with the disease come into class restless and unable to sit still, and see them become very calm after starting a painting. It doesn’t matter whether it’s a few brush strokes or a detailed painting, it shows the power that art has on brain function. It can reduce stress and create a happy mood that may not have been there. Art has the ability to open up a time in their life that has possibly been long forgotten. Even if it’s for a moment in time, that moment can provide a smile, or a story, or just a feeling of contentment that they may not have had.

Anything else:

I have been involved over the years as a team member or co-leader for Habitat for Humanity, building homes around the world, including one in Argentina that stands out to me. I took a photo of the new owners: the grandparents, parents, son and daughter who would live there. They now had a 2-bedroom home with an indoor kitchen. I realized as I looked at the children that someday they would be the grandparents in that same house. That’s giving generationally. That’s when I realized just how important volunteering is.

Currently I am on the board for a medical clinic serving in an impoverished area of Ecuador, and I have spent time teaching school and building homes in the Andes Mountains of Peru.

Thanks to golfers Fore the Memories

DSC_2040No one understands the challenges of caring for the 71,000 Coloradans living with dementia better than two veteran memory care industry professionals who happen to be long-time friends. When they get together, the results are golden – in the form of substantial monies raised in the effort to find a cure for Alzheimer’s disease.

John Bachofer, director of Community Relations for the soon-to-open MorningStar Senior Living of Arvada, and Bob Gossett, executive director of SAFE HOMECARE, recently pooled their talents and created a popular new fundraising event for the Colorado Chapter of the Alzheimer’s Association.

The pair’s Fore the Memories golf fundraiser attracted 138 paid participants and generated a net $10,500 donation to the Colorado Chapter to support ongoing programs and services as well as research for a cure.

The seeds for the event were planted late in 2017 when Bachofer reached out to Gossett, who had organized golf fundraisers for the Association in the past, but never on the scale of Fore the Memories.

“I knew we needed to do something to celebrate the Longest Day and wanted to do a golf event, so I gave Bob a call and we agreed to partner,” said Bachofer.

While neither Bachofer nor Gossett have a family connection to Alzheimer’s disease, both have worked in the industry for more than a decade, giving them strong links to their industry peers. Because of their connections, the event was heavily attended by memory care industry professionals.

“I was trying to find an event that could be universally embraced by the community,” said Gossett. “Being in Colorado, people like to be outdoors.”

Both Gossett and Bachofer are also well-known and highly regarded in the Alzheimer’s community.

“I’ve personally known both John and Bob for more than a decade,” said Amelia Schafer, executive director of the Colorado Chapter. “They are active and outspoken supporters of ours, and events like Fore the Memories are just one more extension of how they help our mutual cause.”

At Bachofer’s urging, MorningStar of Arvada invested in the event to support marketing and organizing.

And the Fore the Memories event enabled Gossett to revive and expand upon a fundraising formula he has been perfecting for years. This was the ninth golf tournament he has organized for the Alzheimer’s Association since 2009, which he estimates have collectively raised nearly $40,000.

Already, the pair are looking ahead to June of 2019 for an even bigger and better Second Annual Fore the Memories.

A daughter’s journey through her father’s dementia

By Marta Burton

I wonder how my mom does this, how she doesn’t lose her mind completely, too. I wonder if she ever thinks, “I didn’t sign up for this.” I’m sure she knew that someday she would lose my dad, that he, being so much older, would probably die before she did. But this is something you don’t prepare for: the plaque and tangle, the ever-advancing cell by cell degeneration of your beloved’s brain. The slow, seeping loss. The anger. The grief.

Marta Burton &amp; father LouI cry a lot when I go to yoga classes. When I start to move and breathe deeply, when I close my eyes and feel, when I move through the postures, suddenly I am overwhelmed with emotion. I’m standing in Warrior position and crumple to the floor, curl myself into child’s pose and convulse with the hot tears of a girl. My father. My dad. My hero.

I don’t know if my emotion is sorrow or gratitude. I’ve always adored my tall, stoic father: Major Lou L. Burton, Jr., professor, poet, lover, husband, father.

Fifteen years ago, an aneurism began to erupt in his brain. One life flight, three months, and seven brain surgeries later, he was released from the hospital and sent to a skilled nursing facility where we kept 24-hour watch. He was a skinny as hell and dramatic scars sliced across both sides of his shaved head. His brain was badly injured. He had no idea where he was or what had happened. He was shaking all the time and didn’t know what that nasty thing up his nose was…the feeding tube. I remember half sleeping in the little bed with him, holding his hands so he wouldn’t pull it out or try to walk. When he slept calmly, I would do yoga while keeping watch. Mom and I and several of their friends took turns staying with him. Once, while mom was taking a shift with him, I went to her place to rest. It was 3 a.m. and I spilled an entire glass of red wine on her white carpet. I took it as a sign that I should stop drinking.

I got used to taking him to the bathroom and eventually got up the nerve to tell him he needed to take a hold of himself and aim. The day he yanked the feeding tube out of his nose and threw it in the toilet, we knew it was time to get him out of there.

We took him home and fattened him up and watched that gorgeous thick hair grow back. And his mind came back, too, a good part of it. For a long while he only remembered his distant past and sometimes saw people who weren’t there…his sister Barbara in the back seat, his first wife. But he always knew us. Eventually, as his brain healed he learned to read and write and even drive again. It was pretty good for a long while, though he never recovered his short-term memory completely nor his ability to direct his own life. He has been dependent upon my mother to create and direct his days. His cognitive abilities improved for a few years, evened out for several more and then began the slow decline. He began to lose his vision, gave up driving after a small incident, gave up reading and within a couple of years he was completely blind.

And then the real descent began. At first, I thought it was the sensory deprivation…not seeing, short term memory loss, not hearing well…no wonder he didn’t know what was going on. But it was more than that.

He gets lost. When all is quiet and no one is talking with him, he drifts from place to place, time to time, in and out of memories and dreams and when he wakes, he is lost. He often asks, “Where are we?” Once he has the answer, “You’re here in the condo, dad, with Matt and Lou and Tascha.” He rejoins the party…”Oh, how wonderful…” and hangs on to the present for as long as he can. He no longer reads. He no longer writes. He no longer looks in wonder at the mountains or counts the antelope on the prairie. He needs to be reminded that he’s holding a cup.

It seems that he sleeps most of time, but I think he’s having fantastical adventures traveling through parallel universes where various life experiences come together in marvelous dream-like ways. He’ll tell you all about them if you let him. Whenever he is in a mood to talk about what he’s been up to, I encourage him.

Sitting on the porch in mom’s Capitol Hill condo last Autumn, he invited me on his journey saying, “What Italian village is this, Marta?” I answered, “Florence, isn’t it wonderful? Buonasera, papa. Shall we order a cappuccino?” (Of course, this is what we’ve always done…me and dad. We drink coffee in cafes and talk about our latest project… the play he’s writing, the show I’m producing.) I order our drinks, go to mom’s kitchen and make them for us. It is a beautiful, noisy day on the corner of 12th and Humboldt St. in Denver, Colorado, but what a stroke of luck to be drinking cappuccinos at a sidewalk cafe in Firenze. Sipping his coffee with a quivering hand he asks me, “What shall we have for dinner tonight?” I’m not sure what to order, so I go inside and find my mom’s “Florence” cook book and start reading recipes out loud to him as if it were the menu. We make our selections. I’ll have pizza and he will have bistecca all fiorentina.  It doesn’t matter that our orders never arrive. Within a few minutes he’s forgotten where we were.

Alzheimer's photo of Marta and LouIt is now the summer of 2017 and my dad has what I can certainly describe as “dementia.” I see him often, always telling him, “This is Marta, dad.” And he almost always says something like this: “Oh, my darling. Oh, my beautiful daughter. I love you, Marta.” I ask him about his day and he tells stories of wild adventures…directing the troops, giving a lecture, riding a train with a group of dancers. Mostly, now I like to sit quietly cuddled against him, just being. I used to feel guilty that I wasn’t engaging him in conversation, but have decided that he knows that this is the best I can offer. Once in a while, he forgets who I am, thinks I’m his wife and gets a little fresh with me. I say, “Daddy, it’s Marta.” He immediately corrects course and says, “Oh, Marta. You’re a good girl.”

He is awfully frail, utterly blind and constantly in need of my mom. She feeds him each bit of the food that she cooks. She walks him to the bathroom more times a day than she can count. You’ve got to face him, help him stand up, put his hands on your waist or shoulders and walk backwards, holding him upright as he shuffles along.

Yesterday his right leg didn’t know what to do any more. He couldn’t command it to straighten and his tall skinny body kept falling to the side. I said, touching his right leg, “Dad, try to straighten this leg.” He couldn’t and asked me, “What’s happening?” It was the first time that I wasn’t sure I could get him safely across the room.

We got to the sofa and I curled up against my sweet, trembling father. His arms are wrapped around me and mine are wrapped around him, holding his hands still. I tuck my head against his bony shoulder. I wonder how many more moments like this I will have.

I wish this would be our last. I wish it could end soon, that he could be released, that mom could be free, that we could all be free. I don’t want to see it get any worse. I don’t want to see him lose any more of himself. I don’t know how much longer my mom can do this. Her strength amazes me. Her heart pierces mine. I witness the depth of her loss and the power of her love.

Khalil Gibran wrote: “Your joy is your sorrow unmasked. The deeper that sorrow carves into your being, the more joy you can contain.”

Mostly I feel exhausted, but when I melt into tears early in the morning or on my yoga mat, I feel the truth of these words: “When you are sorrowful, look again in your heart, and you shall see that in truth, you are weeping for that which has been your delight.”

(Marta’s father passed away in late 2017.)

Marta’s epilogue: During our difficult and beautiful journey alongside my father, my family benefited from the Alzheimer’s Association programs and services, especially those for caregivers. I’ve been inspired to volunteer for the Association through their SPARK! program, singing music that resonates and connects with caregivers and their loved ones. So many families have been transformed by Alzheimer’s disease or dementia and there are many stories. To learn more, go to www.alz.org/co or call the free 24/7 Helpline at 800-272-3900.

Marta Burton has starred in critically acclaimed concerts with the National Symphony Orchestra at the Kennedy Center as well as other prestigious U.S. and international venues. Since moving to Denver from New York several years ago, she has been creating meaningful programs that awaken memory, uplift the heart and honor history. Her shows have been brought to venues across the Front Range including the Ellie Caulkins Opera House, Swallow Hill, Chautauqua, St. John’s Cathedral, the Mizel Museum, Temple Emmanuel, the Lone Tree Arts Center, Lannie’s Clocktower Cabaret, the Boulder Theatre and dozens of others. She is resident advisor for Balfour Senior Living in Louisville, CO. Her father, Lou Burton, Jr.’s struggle with Alzheimer’s-related dementia has helped inspire her career as well as her leadership of Balfour’s team in the Sept. 15 Walk to End Alzheimer’s. To support the team, click here.