Alzheimer's Association of Colorado

One of the things that strikes you is the laughter. It’s frequent and spontaneous. And, if you have never been to a support group for people in the early stages of Alzheimer’s disease, it’s probably unexpected.

When the eight members of the Alzheimer’s Association early-stage support group gathered recently in the Denver metro area with two group facilitators, the conversation covered a lot of ground: from family dynamics to living accommodations, and from eating in restaurants to frayed tempers.

There are 73,000 Coloradans living with Alzheimer’s disease, a good number of them in the early stages. They may live with a spouse or partner, with children or in assisted living. But, after listening in to their conversation about their shared condition and common concerns, it’s clear that this group has a unique bond that comes with their diagnosis.

These people “get it”

Their backgrounds are almost irrelevant. They include former engineers and teachers, homemakers and war veterans. What they share is more personal. Only someone living with Alzheimer’s truly “gets it.” If you’ve never experienced getting lost on your way home from your workplace, driven down the wrong side of the highway, failed to recognize your own home or forgotten how to order fish off a restaurant menu, you can’t appreciate the challenges that people living with dementia face every day. And that’s part of the appeal of an early-stage support group. These people can relate.

“The people in the group are so glad to be here and talk to people going through the same thing as them,” said Hallie Pasko, co-facilitator of the early-stage support group, former caregiver for both her mother and mother-in-law, and volunteer teacher of the Alzheimer’s Association “Savvy Caregiver” class for 14 years.

Karen, one member of the support group, related her experience of going to lunch with her daughter and granddaughter, and being unable to explain what she wanted to order.

“We all laughed,” said Karen, “knowing that I was coming to this meeting. This is my normal now.”

“Most of my friends laugh with me,” said Jerry of his memory lapses.

Alzheimer’s is no joke

Alzheimer’s is the sixth-leading cause of death in the U.S., and the only major disease without a prevention, treatment or cure. For those reasons, it’s no laughing matter, and the response from those living with the disease is not always lighthearted.

Gordy Gibson, the group’s co-facilitator, is in the unique position of being a volunteer instructor for the Alzheimer’s Association while himself living with a Mild Cognitive Impairment (MCI) diagnosis. His mother passed away with Alzheimer’s, and it is uncertain whether his MCI, which can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes, will progress into full-blown Alzheimer’s.

“I struggle with laughing at situations,” said Gordy. “I get irritated, which can lead to a back-and-forth spiral, usually when I can’t do something I need to do. But I don’t want to take it out on her,” said Gordy, referring to Bonnie, his wife of 40 years. “She’s my caregiver. I don’t want to wear her out.”

Gordy brings a unique perspective to the support group. Now 63, he recently retired from his career as a high school history teacher and athletic coach following his MCI diagnosis, which made it too challenging for him to continue working. Because of the changes he’s experienced due to MCI, he can personally relate to the situations his support group encounters.

“Gordy brings that ‘hey, me too, I’m going through this with you’ credibility to the group,” said Pasko. “He can start a discussion because the group can relate to him more than they can to me.”

Changing family dynamics

Gordy is candid about the changes that MCI has wrought for his family. He and his wife have used Gordy’s MCI diagnosis as inspiration to reexamine their relationship and figure out strategies to cope with the changes he is experiencing.

“It’s so easy to fall into patterns of behavior that aren’t healthy,” Gordy acknowledged.

He also noted that while his wife and two sons are extremely engaged with him as he navigates through MCI, his daughter has chosen to steer clear of the process. Having observed her grandmother’s journey with Alzheimer’s disease, Gordy believes it may be too difficult for his daughter to imagine her father on the same path. So, while they remain extremely close, MCI is not a topic of conversation for them.

“She said, ‘Dad, I don’t want you to tell me about testing or any of it. I don’t want you to talk about it,’” said Gordy. “I can honor that.”

However, Gordy did get positive feedback from his father when Gordy decided to pursue a diagnosis. “I’m glad you’re doing this,” he told Gordy. “We missed it with your mother.”

Gordy is not alone in experiencing family challenges.

Being helpful or…

One challenge that many members of the support group face is suggestions or comments from loved ones when they struggle with finding the right word or responding to a question. Sometimes, the offering is seen as truly helpful. At other times, it comes across as impatience on the part of caregivers. The members of the early stage support group offered suggestions to caregivers on how to approach the situation.

When he appears to be stumped in a conversation, Mark noted that “my wife will say what she thinks I wanted to say. It may be what I was searching for, or maybe not. Sometimes I’ll just say ‘help me out.’”

Nancy has found a rhythm with her husband. She’ll look to him and say “help me…help me.”

From Gordy’s perspective, he’d encourage caregivers to take a more measured approach.

“The best thing I can do to help a person (with Alzheimer’s) is to pause three seconds and not jump in,” he said. “Ask a question, like ‘what are you feeling right now?’”

How people with Alzheimer’s want to be seen

When people are diagnosed with Alzheimer’s or another form of dementia, some friends and family members do not react with the understanding that the disease has been slowly and silently progressing for as long as 20 years. It doesn’t happen suddenly, like a broken leg. However, the shock of the diagnosis can take loved ones by surprise and lead them to react as if the disease is in the final stages. Don’t make that mistake.

“When you’re in the early stages (of Alzheimer’s or Mild Cognitive Impairment), you’re still with it,” said Gordy. “It’s not ‘whoosh’ – all the way to the end. I can still do so much.”

Karen, a member of the support group, put it more succinctly: “Don’t treat me like I’m dumb.”

Understand that the changes are unnerving to your loved one

Perhaps the most important message that people in the support group want to convey to their loved ones is that the confusion that comes with Alzheimer’s and other forms of dementia is frightening and disconcerting to them. And sudden changes made by family for the benefit of the person with the diagnosis may not always be welcomed.

“People in the early stages of Alzheimer’s are very aware of the changes going on in themselves,” said Pasko. “Those changes can be very frightening to them.”

“I was pissed for a long time when I got my diagnosis,” said Mark, who was dealing with multiple pressures, including a daughter who directed him to sell his home and move to a new state to live in an assisted-living facility, a son who seems more focused on money than his dad’s health, and a wife who is frustrated by the many changes.

“I’ve always been pretty closed and quiet,” Mark said, “but my filters are evaporating.”

The problems posed by relocating were troublesome for Dawn as well.

“I miss my friends from the neighborhood I lived in for 50 years,” she said. “I had a better support system there. I’m madder than I’ve ever been in my life. I don’t know what to do with that mad.”

For George, the challenge is navigating his Alzheimer’s diagnosis while his wife copes with significant health issues of her own.

“My wife has always been the stronger of the two of us,” he said. “She’s the general and I’m the private. I take care of her – clean and cook and drive. I don’t think I’m that far along (with Alzheimer’s), but my wife might say otherwise.”

Sharing helps

At the end of the session that covered issues ranging from tips on placing handy bulletin boards all around the house to confusion caused by seeing one’s own reflection in windows at night, the group disbanded with hugs, looking forward to the next meeting.

“There’s a lot of laughter and a lot of tears,” said Gordy. “But there’s no better way to share that than with someone’s who’s there too. We can listen.”

Learn more about an early-stage support group

The Colorado Chapter of the Alzheimer’s Association hosts several eight-week support groups for persons living in the early stages of Alzheimer’s:

• Longmont: Mondays, 10 to 11:30 a.m., starting Jan. 27, Longmont Senior Center, 910 Longs Peak Ave., Rooms D and E. Contact Ralph Patrick at 303-813-1669, ext. 9612 or rpatrick@alz.org to schedule an initial interview.
• Westminster: Mondays, 1 to 2:30 p.m., starting April 13, Covenant Living of Colorado, 9153 Yarrow St., Westminster. Contact Ralph Patrick at 303-813-1669, ext. 9612 or rpatrick@alz.org to schedule an initial interview.
• Denver: Thursdays, 2 to 3:30 p.m., starting Feb. 6, Alzheimer’s Association office, 455 N. Sherman St., Suite 500, Denver. Contact Courtney McKibbin at 720-699-9403 or clmckibbin@alz.org.

The Colorado Chapter also will host a Living with Alzheimer’s for People with Alzheimer’s class from 2 to 3:30 p.m. on Thursdays, Jan. 9, 16 and 23, at the Association’s Denver office. Contact Courtney McKibbin at 720-699-9403 or clmckibbin@alz.org.

Holidays can be stressful enough, but when you add in a person living with dementia, gatherings with family and friends become more complex. Finding the right gift for our loved ones can be challenging. The Alzheimer’s Association offers a caregiver holiday guide that shows how, with careful planning, family celebrations can continue to be a meaningful part of the holidays while ensuring safety, comfort and enjoyment for everyone.

If you have a caregiver or a person with Alzheimer’s on your gift-giving list, we’ve got some suggestions to make your shopping a bit easier.

Gifts for people with Alzheimer’s – in the early stages

Items to help remember things:

• Magnetic reminder refrigerator pads
• Post-it notes
• Baskets or trays that can be labeled within cabinets or drawers
• A small pocket-size diary or notebook
• Erasable whiteboards for key rooms in the house
• A memorable calendar featuring family photos – write in special family occasions such as birthdays and anniversaries

Items to help with everyday tasks:

• A memory phone that can store up to eight pictures with the names and contact information of family and friends
• Automatic medication dispenser that can help the person living with Alzheimer’s remember to take medicine
• Nightlights that come on automatically when it gets dark
• A clock with the date and time in large type Items to help keep the person engaged:
• An outing to a movie, play or concert, sporting event, museum or possibly an organized holiday shopping trip with friends and family
• Favorite musical CDs or a CD with a compilation of favorite tunes
• DVD collection of favorite movies
• Activities such as scrapbooking or other craft projects

Gifts for people with Alzheimer’s – in the middle-to-late stages

Gifts that stimulate the five senses may bring back pleasant memories:

• Scented lotions
• A fluffy bathrobe in a favorite color
• A soft blanket or afghan to keep warm
• Comfortable clothes that are easy to remove and washable, such as sweatsuits, knits, large banded socks, shoes with Velcro ties, wrinkle-free nightgowns, nightshirts or robes
• Music – research shows that music has a positive impact on individuals with Alzheimer’s, bringing them back to good times, increasing stimulation and providing an opportunity to interact with family members
• Framed photographs or a photo collage – insert the names of the people in the photo and put in frames or in a photo album created specifically for that person

Gifts for caregivers

The most important gift you can give a caregiver is the gift of time:

• Self-made coupons for cleaning the house, cooking a meal, mowing the lawn or shoveling the driveway
• Time off so a caregiver can do something to meet their needs
• Gift cards and certificates for restaurants, laundry/dry cleaning services, lawn care services, computer/technology support, maid services, and personal pampering services such as massages and pedicures
• Books – in addition to giving novels on the caregiver’s “must read” list, there are a number of books on caregiving

The Colorado Chapter of the Alzheimer’s Association serves families across the state at no charge through offices in Denver, Boulder, Colorado Springs, Durango, Fort Collins, Grand Junction, Greeley and Pueblo.

Since 1980, the chapter has provided reliable information and care consultation, created supportive services for families, increased funding for dementia research, and influenced public policy changes. The Colorado Chapter serves more than 325,000 Coloradans affected by Alzheimer’s disease, including over 73,000 people living with the disease and more than a quarter of a million unpaid family caregivers.

For more information, visit www.alz.org/co or call the free 24-hour Helpline at (800) 272-3900.

By Kathryn White

Mark caught the yellow plastic ball with his left hand, bounced it a few times against the floor of the court, held it out to serve, then paused a moment. He looked at me, “Who do I serve it to?”

I smiled. The question was familiar. I’d answered it half a dozen times in the last hour. “Either one, Mark. Either one.” 

An estimated three million Americans have been swept up into the pickleball craze, but in this quiet rec center in Lakewood, CO, you won’t experience the fast-paced frenzy that is typical in other pickleball settings. You’ll find a moderately paced game—punctuated by laughter and paddle bumps—played by an assortment of people living with Alzheimer’s disease, along with caregivers and friends. We’re playing a simplified version of the game born here in Colorado.

When Georgi and Mark moved to the Denver metro area half a dozen years ago, they signed up for pickleball lessons at their neighborhood rec center. Mark, despite his Alzheimer’s diagnosis, was able to pick up the game just fine alongside Georgi, and the two enjoyed the fitness and friendly competition. As time went on, though, it became difficult for Mark to keep track of the game’s rules and complicated serving and scoring system. Georgi wondered about simplifying the game. Could you leave out the cognitively complicated parts, and still retain the fun and fitness elements? Absolutely, said their instructor and pickleball ambassador, Chris Beal. Georgi and Chris set out to devise the simplified version you’ll now see in action at Whitlock Recreation Center in Lakewood.

During a recent session, it occurred to me we’re practicing more than pickleball at these weekly gatherings. We’re practicing patience and flexibility, and we’re working on accepting and responding positively to whatever comes our way. If a player loses track of the score, we don’t worry; an estimate will do. If a caregiver needs a break for a phone call, they haven’t broken a rule by walking right off the court; we can play with three until they come back. For someone who’s moving a little more slowly than usual (physically or cognitively!), the two-bounce “rule” easily expands to three. And we repeat ourselves.

When Mark asks who he should serve to, his brain is pulling an important memory fragment from a version of pickleball where it actually did matter. But the last thing he needs in that moment from me is a long explanation about why it used to matter and how it no longer does. The second-to-last thing Mark needs from me is a frustrated response that signals he’s forgotten something important or that I’m annoyed by something he’s said or done. I remind myself: smile, answer, keep the game moving.  If this were my son’s soccer game, the referee would be holding her arms out, palms up, saying, “Play on boys!”

I’ve noticed for caregivers with a newly diagnosed loved one this requirement to diplomatically repeat ourselves can be one of our biggest adjustments. It doesn’t feel right. The practice of circling back to the same answer to the same question—over and over and over again—yields a frustrated knee-jerk reaction. It runs contrary to everything we previously understood about social courtesy. If someone needs me to repeat myself, it means they weren’t listening, right? In conversations untouched by cognitive decline, this can mean the person hasn’t respected me enough to pay attention. How do we switch gears and accept this new requirement to diplomatically repeat ourselves when everything in our lives up to this point, and so many other interactions we have with people, doesn’t work this way? Caregivers bring a variation of this struggle to nearly every session of the support group I facilitate, and it comes up weekly at simplified pickleball.

But how, exactly, do we get from frustration to “Play on!” in those tense moments with loved ones? One answer came in a recent caregiver support group: most of what humans communicate comes across through our tone of voice, facial expression, and other body language. The words we say matter, but not nearly as much as we think. For me, this translates onto the pickleball court as 1) walking a little closer and making gentle eye contact, 2) using a friendly tone of voice, and 3) repeating the exact same answer I gave earlier, or perhaps replacing it with a simpler variation.

When my mom was still around, I came to think about this retraining process as learning to listen and respond in layers. What do I notice about her mood or tone of voice as she asks a question again? Is she disoriented or agitated? How can my body language convey reassurance and safety? As the disease progressed, and as I visited more often to give her husband respite, her most common questions revolved around where Dave, her husband, was. “Now, where’s Dave?” “We’ll see him after lunch, mom.” I’d hold her hand; she’d relax and smile.

The pickleball court has become a great training ground for putting this idea of a layered response into action. We’re having fun and the game is moving. A long explanation doesn’t fit here. I field Mark’s question trying to mirror in my response his own spirit in asking. Mark isn’t frustrated. He’s genuinely curious. In his world, he’s not repeating himself. Can that be my world too? It’s an easy question and I have the answer. Today it can be that simple.

Mark picked up the ball that had rolled out of bounds. He walked back toward Georgi, reaching out to hand her the ball.

“Your serve, Markie.”

“Oh, okay.” He held the ball up to serve, then paused for a moment. He looked at her, “Who do I serve it to?”

She smiled: the question was familiar. “Either side, Markie.” 

Will Brossman didn’t set out to be an Alzheimer’s volunteer and advocate. It caught the Texas native by surprise, but after seeing the disease affect his family, he’s decided to meet the challenge head-on in his newly adopted home of Boulder, Colorado.

“It came as a shock to us,” said the 22-year-old Brossman as he talked about his abrupt introduction to Alzheimer’s. While returning home from a family vacation to Hawaii, his grandmother’s husband suddenly died. The care Will’s step-grandfather had provided for his wife had helped mask her dementia symptoms. Soon after her husband’s death, Will’s grandmother was diagnosed with Alzheimer’s.

A recent graduate of the University Alabama, Brossman already had planned to relocate to Boulder to be close to his girlfriend as she completes a graduate degree at University of Colorado. After arriving in Colorado and beginning his career in financial advising, Brossman didn’t waste time getting engaged in his new volunteer passion.

His first step was to volunteer for the planning committee for the 2019 Boulder Walk to End Alzheimer’s, where he met Catie Davis, development manager for the Alzheimer’s Association’s Boulder office.

“Will jumped right in,” said Davis. “To see a young professional joining the volunteer committee brings a level of excitement with it. It’s not an age group we see a lot of. He brings new energy and a different perspective to things.”

Soon after that, Brossman met Ralph Patrick, regional director of the Boulder office, and the stage was set for a deeper level of involvement.

“Will is incredibly mature and passionate,” said Patrick. “He brings a lot of energy along with his unique point of view. While Will’s age (as an Alzheimer’s education instructor) might be a surprise to some people who attend classes, he’s incredibly capable and willing to learn. What he lacks in experience, he makes up for in his ability to engage well with people. He brings a lot to the table, and I’m thrilled to have him as a volunteer.”

Multi-level commitment

In addition to working on the Walk to End Alzheimer’s planning committee, in his first few months of volunteering with the Alzheimer’s Association Brossman is learning how to be a community educator to teach classes like “Understanding Alzheimer’s and Dementia” and “The 10 Warning Signs.” He’s also in training to serve as a volunteer for the Association’s free 24/7 Helpline to be a resource for people in the community who have questions about the disease.

And, in perhaps his most interesting role, he’s teamed up with another Alzheimer’s Association volunteer community educator, Gordon Gibson, to lead a “Dementia Conversations” class. Gibson, a retired teacher, is living with Mild Cognitive Impairment (MCI). People with MCI experience a measurable decline in memory and thinking skills, and are at an increased risk for developing Alzheimer’s or another form of dementia.

“I want to be involved with the Alzheimer’s Association, and there’s so much I can learn from Gordy Gibson,” Brossman said. “This is very personal for me, and I like helping. I’ve told Ralph: ‘throw me in the fire. I’m ready.’”

The involvement of young adults in the Alzheimer’s cause is important because the disease has an impact on many more people than those diagnosed with it and their spouses.

A growing number of young Alzheimer’s caregivers

An estimated 5% of the U.S. population currently is serving as unpaid caregivers for people living with Alzheimer’s disease. Among Millennials (ages 23 to 38 in 2019), an estimated one in six is providing care for someone living with dementia. Nearly half (42%) report that they are the sole caregivers for their loved one. Key areas of care provided include help with transportation, grocery and other shopping, help communicating with healthcare professionals, housework, monitoring the health of their loved one, meal preparation and help managing finances.

“We think of this as an old person’s disease, but there are a lot of young people who are affected because they’re caring for parents or grandparents,” said Patrick.  “Looking at the projection of nearly 14 million people in the U.S. alone living with Alzheimer’s by 2050, we are going to need to have everyone involved until we can find a cure.”

John Tredennick isn’t just a member of the board of the Colorado Chapter. He’s also an alumnus, having served on the board in the early to mid-1990s when Colorado was an independent chapter under the Alzheimer’s Association umbrella. What inspired John to return to the board in 2018, and what changed in the intervening years?  Here’s the story in John’s own words…

“In my first term on the Alzheimer’s Association board, I was a lawyer with Holland & Hart, which had a long tradition of both encouraging and expecting lawyers to be well-rounded and contribute to the community. I had a personal connection to the (Alzheimer’s) cause: my father had Alzheimer’s and we were caring for him at home. I, too, was affected by this disease…second-hand suffering. So the Alzheimer’s Association had a special place in my heart.”

What was John’s first impression of the Colorado Alzheimer’s board? “As a board and an association, it was so well-run and solid, I’d have thought it was around for 40 years. It really was amazing that it ran so smoothly, with a solid board and leadership. It seemed to be hitting it out of the park, even by the standards of an established organization. And the Walk (to End Alzheimer’s) was the biggest thing and the most fun thing, and it still is.”

Flash forward about 25 years, and John returned. It was a conversation with fellow equestrian Beth Bowlen Wallace, a member of the current Alzheimer’s Association board in Colorado, that renewed his interest.

“I knew Beth Bowlen – we’re both show jumpers – and we talked about the great things the Association does. I decided it could be a great time to give back. The Alzheimer’s Association remains nearest and dearest to my heart for the same reasons it does for many others affected by this disease. You’ve got to find the thing that touches you where you can contribute.”

And with 25 years of added experience behind him, John figured he might have more to offer.

“Twenty-five years ago, I had a passion about technology, but tech was in its early stages – before email. Since then, I’ve developed a technology platform used by companies like Apple, Intel, AIG and others around the world. I bring 30 years of speaking and teaching experience. I’ve delivered hundreds of talks around the world…written six books. Hopefully, there will be something in there for the Association.”

The timing also was right. John had recently sold the software company, Catalyst, that he founded while at Holland & Hart. He thought that would free up time in his life. The lull didn’t last long: he formed a new softwear company (Merlin Digital Magic) and a new non-profit foundation (www.MerlinFoundation.org, which focuses on open-source legal software). But John remains committed to the Alzheimer’s cause, and believes he can use his technology expertise to make a difference. He’s already introduced advanced telecommunications equipment into the Denver office, and is exploring other cutting-edge technology to improve communication.

So, what’s changed in the 25 years since he departed the board?

“Ironically, aside from the obvious growth in the organization, there’s no difference, but that’s a compliment to how well it was run under Linda (Mitchell) and how it’s run now. Same spirit. Same kindness. Same commitment. Just bigger. It’s an amazing thing, and the highest compliment. It’s one thing to get a team to the Super Bowl. It’s another to keep them there year after year. How does someone maintain such a high level of spirit and service over a long time?”

It’s that level of excellence that John believes should attract other business executives to the Alzheimer’s Association if they want to be part of the board of an organization that makes an impact,

executes on a mission, and provides a necessary service to the community.

“This is an organization that is drama-free and filled with happy people on a mission. That’s important if you’re going to devote your precious personal time to make sure it’s worth the effort.”

Perhaps it’s due to the priorities that he learned as a young lawyer at Holland & Hart. Perhaps it’s in memory of his father. John believes that getting involved and giving back to the community is a priority for him, and should be for many others.

“We’re part of a community. A community only stands as tall as its members. Without people contributing, we don’t have a community. We all have a duty to serve when we can.”

An estimated 5% of the U.S. population – 16.2 million people – is currently serving as volunteer, unpaid caregivers for their nearly 6 million loved ones living with Alzheimer’s disease.

This veritable army of spouses, children, siblings, grandchildren, friends and neighbors is giving its time – and often its own money – to care for loved ones living with Alzheimer’s, the last major disease without a prevention, treatment or cure.

November is a special month to honor this unique, dedicated group of people. Originally designated as National Alzheimer’s Disease Awareness Month by President Ronald Reagan in 1983, the event later was expanded by President Bill Clinton to honor our nation’s caregivers: National Family Caregivers Month.

“Providing one-on-one care for a loved one is a very personal experience,” said Amelia Schafer, executive director of the Colorado Chapter of the Alzheimer’s Association. “For some, it’s a way to show their love for a family member or friend. For others, it may be a way to give back and show their appreciation.”

The reality is that these volunteer caregivers are generally inexperienced in the tasks facing them. Half (51%) report having no prior experience performing medical/nursing-related tasks. But, despite the physical, emotional and financial strain, 45% of caregivers surveyed by the Alzheimer’s Association reported the experience was “very rewarding.”

Alzheimer’s caregiving by the numbers

The statistics surrounding Alzheimer’s caregiving are as startling as the disease itself. The sixth-leading cause of death in the United States and the only leading disease without a prevention, treatment or cure, Alzheimer’s poses a massive healthcare challenge that could not be met without the selfless acts of volunteer caregivers. Here’s a statistical look at the disease and the caregivers:

• Alzheimer’s caregivers across the U.S.: 16.2 million in 2018
• Duration of care: more than half (57%) of family caregivers of people with Alzheimer’s or other dementias have provided care for 4 or more years. Some provide care for up to 20 byears.
• Number of hours: In 2018, volunteer caregivers in the U.S. provided an estimated 18.5 billion hours of unpaid care.
  • An average of 21.9 hours of care per caregiver per week.
• Value of care: Based on an average of $12.64 per hour, the unpaid Alzheimer’s care provided in 2018 was valued at $233.9 billion.
  • That is more than 11 times the total revenue of McDonald’s in 2018 ($21.03 billion).
• Out-of-pocket costs: The contributions made by volunteer caregivers go behind their time. On average, in 2018 dementia caregivers reported spending $11,233 each for medical, personal care and household expenses for the person with dementia.
• Personal toll: A Stanford University study reported that caregivers have a 63% higher mortality rate than non-caregivers, and 40% of Alzheimer’s caregivers die from stress-related disorders before the person for whom they are caring.
• Double responsibilities: One in four caregivers report they are “sandwich generation” caregivers, meaning they care for children under age 18 as well as an aging parent.

In Colorado

There are more than 73,000 Coloradans living with Alzheimer’s disease. Supporting them are more than a quarter of a million volunteer caregivers.

Caregiver training/education

The Alzheimer’s Association offers a wide range of educational programs and services – all at no charge – for caregivers of persons living with Alzheimer’s disease. To learn more, go to www.alz.org/co or call the Association’s free 24/7 Helpline at 800-272-3900.

Early in her professional career, Sandy Clarke was employed in retail management when the feeling came over her that she needed more personal satisfaction in her work life. She felt the need to “give back” to the community. That decision led her to take a job as a certified nursing assistant.

“I fell in love with seniors,” she said, and started her down a new path that redefined her career and led to a virtual second career as a volunteer for the Alzheimer’s Association.

It was in 1990, when Sandy was working as certified nursing assistant and activities director in the Colorado Springs senior living industry, that she first offered to get involved in the brand new Alzheimer’s Association Memory Walk. Before she knew it, she was chairing the event.

That inaugural Memory Walk – since redubbed the Walk to End Alzheimer’s – raised $2,000. Thirty years later, Sandy is still helming the Colorado Springs event. This is her final year as chair before devoting more time to her grandchildren and great-grandchildren, and her committee is working towards a much more ambitious goal of $285,000.

Employed full-time as memory care director at Bear Creek Senior Living, the winner of the 2019 Joe Henjum Senior Accolades Volunteer Award acknowledged that she’s tried to step down from the Colorado Springs Walk leadership role a number of times, but the 30^th anniversary feels like the right time to turn the reins over to someone new. “I suspect I’ll always be involved in the Walk on some level,” she admitted.

Making a difference for people living with Alzheimer’s

Sandy’s early years in the assisted living industry helped motivate her to be an agent for change on behalf of at-risk seniors. She perceived a need to improve living conditions for seniors, and particularly those living with Alzheimer’s disease.

“The industry used to do more restraining of people with Alzheimer’s, which is not right,” she said. “We need to be focused on quality of life and purpose in life – being happy.”

That career change led Sandy to immerse herself in the issues that affect older people. Beyond her day job, she has volunteered with the Alzheimer’s Association in a number of ways. She has delivered Alzheimer’s-related education programs in the community, and served a total of 14 years leading Alzheimer’s support groups, including an early-onset group and one focused on frontotemporal dementia.

The target audience for Sandy and the Alzheimer’s Association is a large and growing one. An estimated 73,000 Coloradans are living with the disease – among nearly 6 million people in the U.S. and 47 million worldwide. In Colorado alone, another 250,000 family members and friends serve as unpaid caregivers for their loved ones.

The money raised through the Colorado Springs Walk to End Alzheimer’s – one of a dozen Walks around Colorado and hundreds across the country – go to support education, programs and services provided at no charge to families, as well as research to find a cure for the sixth-leading cause of death for Americans, and the only leading disease without a prevention, treatment or cure.

“It is volunteers like Sandy who make the Alzheimer’s Association run,” said Charlotte Long, development manager who oversees the Walk to End Alzheimer’s in Colorado Springs. “Of course, most volunteers don’t commit to a 30-year term of service. We’ll forever be indebted to Sandy for all she has given to us in service of the Colorado Alzheimer’s community.”

The family of Lonnie McIntosh made a commitment: to care for their husband and father in their family’s Denver home as long as possible. For 15 years after he suffered a stroke, and five years after his Alzheimer’s diagnosis, wife Jan and their four children cared for Lonnie at home until he passed away a year ago, just a week after his 75^th birthday.

“Alzheimer’s is a frightening but interesting process,” said Jan. “We went through phases. Fortunately, our doctors at Kaiser Permanente referred us to the Alzheimer’s Association, and they immediately embraced us. That’s what saved us.”

With the onset of Alzheimer’s disease, Lonnie’s interactions with his family became more challenging, although son Justin noted that “it never got to the point where he didn’t recognize us.”

Besides Lonnie’s overall health, one of the major changes was his personality, which became more unpredictable. At times, the family feared for Jan’s safety as Lonnie struggled with paranoid thoughts and would become agitated and aggressive.

“This is what I call the dark days,” said Jan. “I didn’t know what to do. The kids worried about my safety. We didn’t know if we would be able to continue to have him safely at home.”

“As a caregiver, I tried to be conscious of how his dementia was affecting me,” said Justin. “You’re going through it with him and it can affect you in a negative way. You need to reframe from time to time.”

Justin recalls driving down the street, fresh from an interaction with his father, where he had to keep reminding himself: “stop being mad…stop being mad.”

Working as a team

The McIntosh family took the approach that they needed to operate as a team to care for one another as well as Lonnie.

“We would hold family meetings to get things out,” said daughter Kara. “We needed to exercise patience with dad and patience with each other. It’s important to not feel guilty for needing time away.”

The family also realized the importance of learning from the experience of others. While each case of Alzheimer’s is unique, the changes the individual experiences and the adjustments the family must eventually make have a common thread. Connections to support groups through the Alzheimer’s Association helped provide Jan and her children with contacts with other caregivers – people who understand and can relate to the challenges they faced.

“It was good to hear from people in the support group who were ahead of us in the process,” said Jan. “Scary, but good.”

Sharing their experience

With a year of perspective on their experience as caregivers, the McIntosh family is looking to re-engage in the Alzheimer’s community in order to help others who are facing the same challenges.

“We want to help other people better understand this disease,” said Kara.

One of the important lessons they want to share is that the person living with Alzheimer’s should continue to be an involved member of the family.

“People can function for a long time with this disease,” said Jan. “There’s still life to be lived.”

That life should include as much social engagement as possible, not just sitting and watching television, Justin believes. “There should be a sense of normalcy, not just frustration.”

Lonnie and his family were active participants in programs for people in the early stages of Alzheimer’s.

Another lesson learned is that even while the loved one is alive, there will be grieving. And the grief does not end when the person passes away.

“I was grieving for a long time before he was actually gone,” said Justin. “There’s some relief (when death does finally come), but we’re still grieving.”

The importance of an early diagnosis

Finally, the McIntosh’s believe that other families should understand the benefit of receiving an early diagnosis for their loved one. While it doesn’t change the inevitable, it helps the family prepare and take advantage of educational programs and services, such as those offered at no charge by the Alzheimer’s Association.

“An earlier diagnosis would have helped us be more on the ball,” said Kara.

To learn more about Alzheimer’s Association educational programs and services, go to www.alz.org/co or call the Association’s free 24-hour Helpline at 800-272-3900.

A traveling art exhibit composed of watercolor paintings created by artists living with Alzheimer’s disease or other forms of dementia will be on public display – and for sale – throughout the Colorado Springs area starting this month and through late October.

Every week, participants in the Alzheimer’s Association Memories in the Making® art program gather in supervised settings to create new watercolor paintings at residential care facilities and day programs throughout the region.

A distinguished panel of artists and jurors has selected 79 pieces of art from those sessions to be featured in this year’s Memories in the Making Traveling Art Show, which will be on display at eight regional locations starting with MacKenzie Place, 1605 Elm Creek View, Colorado Springs, from Aug. 21 to 25.

The original art is being offered for sale: 34 framed paintings available for $150 each and 45 other matted (unframed) paintings available for $40 each. Proceeds from the sales will go to the Colorado Chapter of the Alzheimer’s Association to support information, programs and services offered at no charge to Colorado families, as well as research to find a cure for the disease, the sixth-leading cause of death in the U.S.

The value of the MIM experience

“Painting every week provides those with memory loss a place to feel a sense of purpose, to socialize with others, and engage in an activity that keeps brain cells firing,” said Betsy Cook, Memories in the Making art consultant for the Pikes Peak region. “Many have never painted before but are able to express thought and emotions when given this opportunity. The artist’s documented comments and memories become powerful tools that reassure family and caregivers that the essence of the individual is still there.”

Following is the Colorado Springs schedule for the MIM art show (during normal business hours):

• Aug. 21 to 25 – MacKenzie Place
• Aug. 27 to Sept. 1 – Morningstar at Mountain Shadows, 5355 Centennial Blvd.
• Sept. 3 to 8 – New Dawn Memory Care, 4185 Briargate Pkwy.
• Sept. 10 to 15 – Jackson Creek Senior Living, 16601 Jackson Creek Pkwy.
• Sept. 17 to 22 – Springs Ranch Memory Care, 3315 Emmett View Dr.
• Sept. 21 – Walk to End Alzheimer’s at America the Beautiful Park, 126 Cimino Dr. (limited exhibit)
• Sept. 24 to 29 – Brookdale Skyline, 2365 Patriot Heights
• Oct. 1 to 27 – Pikes Peak Library District/East Library, 5550 N. Union Blvd.

The origins of Memories in the Making

What began in Colorado in 1994 as a pilot program at five sites, Memories in the Making (MIM) has grown to nearly 100 sites across the state. The MIM art groups meet in assisted-living communities, nursing homes and adult day programs throughout the state. The MIM groups are facilitated by staff and volunteers who are trained by the Colorado Chapter of the Alzheimer’s Association.

The Alzheimer’s Association has found that the MIM program provides a number of benefits to those with the disease, including:

• Improved self-esteem
• An outlet for emotions
• Increased attention span and focus
• Reduced isolation – an opportunity to socialize
• Tapping into pockets of memory that still exist
• Reconnecting families

Locations in the Pikes Peak region where the Alzheimer’s Association MIM art program is offered include: Bear Creek Senior Living, Bethesda Gardens (Monument), Brookdale Skyline, Colonial Columns, Daybreak Adult Day Program (Woodland Park), Genesis Pikes Peak Center, Jackson Creek (Monument), MacKenzie Place, Morningstar Bear Creek, Morningstar Mountain Shadows, New Dawn Memory Care, Springs Ranch Memory Care, Retreat at Sunny Vista, Sunrise at University Park and Voyages Adult Day Program. Information about the Memories in the Making program is available here (https://alz.org/co/helping_you/memories-in-the-making).

Tim Glennie wears many hats in a busy life. He’s managing partner of a company. He’s a community volunteer. He’s a husband. He’s a dad to three kids. He’s a family caregiver.

But this year is different. It’s Tim’s first year celebrating Father’s Day without his beloved dad, William (aka Bill, Barnacle Bill) Glennie, who passed away from Alzheimer’s disease late last year at age 86. It took 12 years for Alzheimer’s to run its course. Over that time, Tim learned a lot about the disease. He developed an understanding of the toll it takes on caregivers. And he learned about himself.

“I always looked at it as ‘my parents took care of me when I was young and now it is my turn,’” said Glennie, managing partner of BridgeView IT, a Denver-based staffing solutions firm. “I did deal with guilt if I felt I was not with him enough, but I learned that once he could no longer retain memories, that the visits were really for me. I had to make sure the visits were meaningful to me.”

As his dad’s dementia progressed, Tim helped move his parents to Denver so that he could provide more support to his mother. He called the Alzheimer’s Association free 24-hour Helpline to get assistance in finding good housing options for his dad as well as support for his mom.

“The people (at the Alzheimer’s Association) care so much,” said Tim. In fact, the process inspired him so thoroughly that he earned a spot on the Colorado Chapter’s board of directors, and he currently chairs the planning committee for the Denver Walk to End Alzheimer’s – the sixth-largest Alzheimer’s Walk in the nation.

Looking back on a challenging time

While a dozen years with Alzheimer’s disease stripped Bill Glennie of his memories, son Tim enjoys vivid recollections of his dad, both before the disease’s arrival and up until the very end.

“My favorite memory of my dad…he taught us to work and to work hard,” said Tim. “We learned the ideals that he wanted to pass on like the expectation of work for money and inspection of quality before we got paid. He was clear about what he wanted, but then he was generous in praise of our hard work.”

Tim also learned an important lesson about Alzheimer’s disease and how it affects people differently – not just those with the diagnosis, but caregivers as well.

“I did have a family member who was reluctant to accept that dad had Alzheimer’s,” said Tim. “They would hold out hope that things might get better, maybe by changing medications or trying new techniques to stimulate the memory.”

As Tim observed his dad progress through Alzheimer’s, he came to the painful realization that the father he knew would never return.

“I had to mourn that the person I knew and loved was not himself, and he no longer knew who I was nor could he make new memories,” said Tim. “It is a painful step, but one that was helpful in me coming to peace with things after my dad passed away.”

Finding joy in the tragedy

But even in the latest stages of the disease, Tim and his family were able to find joy in their interactions with father and grandfather Bill. “One of the last times my family was around my dad was on his 86^th birthday,” recalled Tim. “We brought doughnuts and coffee and he asked ‘why all the fuss.’ We told him it was his birthday. Dad asked how old he was and we said ’86.’ He laughed and said ‘I’m old.’ As those of you with a loved one with Alzheimer’s can appreciate, we got to enjoy this same question a few more times. And it never got old.”