Denver Broncos Continue to Show Support

broncos-banner.jpgThe Denver Broncos – team and family – continue to show their support for the Alzheimer’s Association of Colorado as we raise funds to support the mission of eliminating Alzheimer’s disease through research, providing care and support and promoting brain health.

Team Super Bowlen – the family and friends of team owner Pat Bowlen – currently stands as the No. 1 fundraising team for the Denver Walk to End Alzheimer’s, having exceeded its $100,000 goal. “This one’s for Pat!!” is the slogan for the super fundraisers.

Beyond the Bowlen family, the Denver Broncos team, a community partner of the Colorado Chapter, has been a consistent supporter of the Association. The team is continuing that support by displaying a banner on the side of Sports Authority Field at Mile High Stadium through the end of the year.

“The Denver Broncos and the Bowlen family have been amazing partners for the Alzheimer’s Association of Colorado,” said Gene Sobczak, executive director of the Colorado Chapter. “We greatly appreciate their support, which has grown over the years and helps raise the profile of the Alzheimer’s Association throughout the state.”

The Walk to End Alzheimer’s is the principal fundraiser for the Colorado Chapter, and it supports the Association’s ability to provide programs and services at no charge to Colorado families. The Colorado Chapter’s collective 2017 target for its 11 Walks to End Alzheimer’s is $2.3 million, and it will continue working to meet that goal through Dec. 31. To make a donation to the Alzheimer’s Association of Colorado in the name of Denver Broncos’ owner Pat Bowlen and Team Super Bowlen, click here.

 

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The Surprise Christmas Letter

DSC_0100For the first 41 years of their marriage, Harold and Barb Arnold didn’t send out a Christmas letter to friends and family. Not about vacations. Not about the births or graduations of their six children, 11 grandchildren or six great-grandchildren.

It wasn’t until the holiday season of 2016 that something happened to change their lives that they felt required a special message. So when their friends and family members opened the Arnolds’ holiday card in 2016, they were in for a surprise. Not only was there a holiday letter enclosed, but the couple shared the news that Barb was recently diagnosed with Alzheimer’s disease.

With his wife’s permission, Harold penned the letter in her voice, introducing “the new Barb,” and describing a few of the ways the disease was affecting her. It concluded with their honest assessment: “(We) continue to have fun and enjoy life every day. We still value you as our friend.”

The candid letter elicited the kind of warm response you would hope for, with the vast majority of recipients calling to express their support and offer to help.

Families facing an Alzheimer’s diagnosis, like the Arnolds, struggle with how to tell their friends and family the news. The couple believes that many of their inner circle suspected the diagnosis might be coming. The toughest was telling some of the most distant relatives who haven’t been around frequently enough to observe the subtle changes in Barb’s memory.

While some family members may be a bit in denial, one of the reactions the letter generated was welcome visits and promises of visits from children, grandchildren and great-grandchildren.

The solution creates another problem

Ironically, for the Arnolds the toughest part of the process of publicly acknowledging Barb’s diagnosis was what to do with the outpouring of genuine care and support.

“We did the first step right (sending the Christmas letter), but we didn’t know what to do with all the offers to help,” said Harold.

“We’re not used to receiving help,” Barb added, noting that they are more likely to offer support to others than seek it in return.

Channeling good intentions

The challenge for both the recipient of sincere offers of help and those delivering them is how to make them meaningful. Barb notes that she responds to the anticipated question of “How are you feeling” with her standard response: “I feel fine,” emphatically adding: “And I am!”

But the couple doesn’t want to dismiss those offers of support because they realize that there may be a time when they will be needed more.

So this year, the couple is going to revisit Barb’s Alzheimer’s diagnosis in their second annual Christmas letter, this time offering some specific examples of what people can do, starting with the idea that friends and family can contribute photos and memories that they have with and of the Arnolds back to them for inclusion in a new scrapbook.

They also will share some of the tips from the Alzheimer’s Association of Colorado on what well-intentioned loved ones can do to help those with a diagnosis. Some of those tips include:

  • Educate yourself about Alzheimer’s disease.
  • Stay in touch.
  • Be patient.
  • Offer a shoulder to lean on.
  • Offer to help the family with its to-do list.
  • Volunteer with the Alzheimer’s Association.

The tipsheet also offers a few ideas on understanding the diagnosis from the perspective of the person with it, including:

  • “I’m still the same person I was before my diagnosis.”
  • “My independence is important to me. Ask me what I’m still comfortable doing and what I may need help with.”
  • “I can still engage in meaningful conversation. Talk directly to me if you want to know how I am.”
  • “Don’t pull away. It’s OK if you don’t know what to do or say. Your friendship and support are important to me.”

Barb offered a simple example that hit right at the heart of the issue. Since her diagnosis, she has given up driving, so when Harold is busy and she wants to get around town, she’s stranded.

“So if I want to buy him a surprise present, I have to ask him for the money, and then ask him to take me to the store,” she laughed.

Everyone’s adjusting

An Alzheimer’s diagnosis changes everything, but the Arnolds are adapting. Harold is learning how to cook, with mixed results. And he’s trying to pick up more of the household chores that Barb routinely handled.

The other big adjustment is that the couple is planning their inaugural venture into social media. They intend to enlist one of their grandchildren to set up a Facebook page for them so they can share the photos and memories their friends and family contribute, and to stay in closer contact with their distant relatives.

How to help those with an Alzheimer’s diagnosis

To learn more about how you can support loved ones with an Alzheimer’s or dementia diagnosis, call the Alzheimer’s Association’s confidential and free Helpline at 800-272-3900. It is staffed by trained professional counselors who can offer counsel and direction to local programs and classes, all at no charge, as well as resources for legal and lifestyle planning. You can also visit us online at alz.org/co.

About Larry Schwartz

By Cherie Karo Schwartz, his loving wife

My husband, Larry Schwartz, was just Larry to most everyone who knew him, yet he was really Dr. Lawrence Schwartz: MIT- and UCLA-educated aerospace engineer, chief scientist and Top Fellow at Hughes and Raytheon for 43 years.

Larry’s salient attribute, beyond his genius and magnificent mind, was his gentle sense of humor filled with puns. Blessed with a kind heart, Larry had always been a quiet man until the onset of Alzheimer’s disease in 2006 gave him the gift of gab. He loved finding out about others’ lives, and he had seven strong personal stories of survival and strength that he loved regaling anyone and everyone with, usually in a running dialogue.

One of Larry’s loves was supporting the arts in all forms: liberal, Jewish and educational causes, and organizations for social justice. Always creative, he designed my wedding dress per our shared vision of it, my engagement ring, our wedding invitation, and our entire home. He even made some of the furnishings.

Larry also was an outstanding artist who, after his Alzheimer’s diagnosis, contributed several drawings to the Alzheimer’s Association Memories in the Making (MIM) arts gala, which he attended for several years, helping to raise funds for the Association. He watched with pride as two families got into a bidding war for one of his standalone pieces, “Pigasus,” in the silent auction. He offered commentary and got to talk with the winners. He was flying with joy.

Larry derived great happiness from the dual support groups, poetry, croquet, befriending some special people, and being on the advisory board for the Alzheimer’s Association’s Early Stages Fall Forum. He loved working under the guidance of Alzheimer’s staff members Vicky, Ken and Sharon. One of his proudest moments came as he was chosen to address the crowd at the Denver Walk to End Alzheimer’s. He spoke beautifully before thousands of people.

Larry lived with Alzheimer’s for more than nine years, doing big jigsaw puzzles, playing games, dancing, singing, and loving life. Sadly and tragically, his life ended too soon. Until the end, he still knew those he loved and who loved him, and was as kind and sweet as he had always been throughout his life. He died very peacefully on Nov. 22, 2015. His memory is a blessing, and his stories live on in those he loved.

In Larry’s memory, I am proud to underwrite the Early Stages programming of the Alzheimer’s Association of Colorado for the coming year through the Larry Schwartz Remembrance Fund. These were interactive programs that Larry loved dearly, and supporting them for other families living with Alzheimer’s is a fitting way to honor his memory.

Top Denver fundraiser enjoys Broncos victory

Devin Olsen, the top individual fundraiser for the 2017 Denver Walk to End Alzheimer’s, was a guest of the Denver Broncos at their recent victory over the Dallas Cowboys. Devin shares her excitement at attending the game, as well as her motivation for creating her first fundraising event for the Alzheimer’s Association of Colorado, a community partner of the Broncos. The sold-out stadium saw information about Alzheimer’s disease, and the family of owner Pat Bowlen presented the Colorado Chapter with a check for $100,000.

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“I was completely in shock when I got a call on Wednesday to attend the Broncos game on Sunday, Sept. 17, with the Alzheimer’s Association and have field access as well, because I was the highest individual fundraiser for the Denver Walk to End Alzheimer’s. I was extremely excited to experience the game and see the Denver Broncos players from the field level for a bit. It was so cool to look up at the 76,000 + people who were cheering for my team, the Denver Broncos, and who were also going to be educated a bit about the Alzheimer’s Association, and how the Bowlen family got involved to honor Broncos owner Pat Bowlen, who is living with Alzheimer’s.

“Yes, I may have been the highest individual fundraiser, but since I have lost two family members to this horrible disease in the past years, I wanted to raise the most money I possibly could in memory of my family members, and for my team, LCC Stonegate, where my team members and I work with residents affected by Alzheimer’s/dementia and their families.

“Thank you, Alzheimer’s Association and Denver Broncos, for inviting me to the game! I greatly appreciated the opportunity and enjoyed the experience of being on the field and the game.”

We still need your help reaching our $1.5 million goal. Donate now.

Lessons from a Caregiver

sisters Dorothy & Mary (3)

Martha Stevenson Wright

From loving daughter to dedicated caregiver, author Martha Wright shares her experiences from six years of providing care to her mother who was living with Alzheimer’s disease. A member of the Piney Creek Chapter of the National Society of the Daughters of the American Revolution team for the Denver Walk to End Alzheimer’s, Martha shares her insights and lessons learned.

When it starts, you are oblivious.  When it’s happening, it’s unreal.  When it’s over…well, it’s never really over.

Several years before I realized that my sweet mother was ill, my parents would joke about the funny play on words “old-timers,” using it in a lighthearted and playful way.  Or, perhaps, it was actually a way of coping with what they both knew (or feared) was ahead.  The taboo word Alzheimer’s would never be spoken.

In 2002 my father passed away and it was my turn to learn about everything my mother was losing.  It was a shock.  Dad had been kind to keep so much from us but that kindness had an especially difficult sting for me.

I was teaching full-time and that means 6:30 to 4:30 at school, working a couple of hours in the morning and another couple in the evening, at least part of one weekend day, planning and preparing, grading and analyzing, worrying and starting it all over again.  After so many years of teaching and dealing with kids, parents, and colleagues, I was exhausted.  Yet I had no idea how weary I would soon be – physically, mentally, emotionally – exhausted to the very depths of my soul.

The diseases of Alzheimer’s and dementia are different for everyone so each person’s experience is unique but here are some things that I do know.

FIND HELP:

Especially the help of someone who knows because they have been through this long journey.  I was so busy with children, grandchildren and students that I did not seek help, and I regret that.  I felt so alone.  I couldn’t talk to my mom about my problems anymore.  My husband was very understanding, but she wasn’t his mom.  We had a great doctor, but this was not his experience.  I needed someone who actually knew what it felt like.  I stopped by to check on my mom every morning before going to school.  After working all day, before going home and making dinner, I stopped by to see her again, at first when she was still in her own home and later in a care facility.  I told myself I was too tired to do any more after a long day, but reaching out and finding just one daughter like me – even once – would would have made a world of difference.  Being tired or lacking time do not compare to the healing power of the human touch.

READ:

Anything that will help you to cope.  The Long Goodbye: Memories of My Father by Patti Davis, Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias by Amy Newmark, Mom, Are You There? Finding a Path to Peace Through Alzheimer’s by Kathleen A. Negri, and The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease by Mac and Rabins are all excellent resources that I wish I had discovered sooner.  I had used books for enjoyment and to learn about the world all my life, yet it did not occur to me that I could get through the worst experience in my life just by reading.  Sharing the experiences and knowledge of others through reading would have helped so much to feed my depleted soul.

LOVE:

Just like you always have, or even more.  Little daughters hug their mommies and need their mommies and want to grow up to be just like them.  Grown daughters still need their mothers to learn from and share their own grown lives with.  Life is beautiful when it continues in this way until the end.  But when it does not, the roles can be reversed and the daughter becomes the mother.  It happens slowly and with difficulty, mostly because no one tells you how.  Over time, I learned to do things I had never done before: read to my mother, help her get dressed, talk in a way to bring back the happy memories.  What I did not do – what I will forever regret not doing – is learn to listen more without embarrassment.  There were many times that Mom did or said something wrong or funny and we would both laugh at that.  But we rarely talked about her feelings and fears.  Talking more, and more honestly, when we still could, would have been best for both of us.  Talk more, listen more, hug and kiss more, and later you will have more warm memories for yourself.

DON’T FORGET YOURSELF:

No matter how difficult your journey, you need to do things for you.  I neglected exercise, healthy eating, getting enough sleep, and doing the things that I like to do.  Some of this was inevitable because that’s what women do.  When you are raising a family and working there is so little time left for you to take care of yourself.  Yet all those people who you love need you to be healthy more than anything.  One of my most memorable moments of the six years that I cared for my mom was very near the end.  About six months before she passed away we started hospice care.  I learned a lot about professionals when the hospice team took over.  They knew exactly what they were doing and were kind but also frank.  Through tears I told the doctor how guilty I felt if I did not stop by after work to visit Mom every single day.  He explained to me that she was at a point in her disease where she did not experience time and really didn’t know if I had skipped a day.  Well, then the floodgates opened up and relief took over.  I hadn’t known how really sad and guilty and tired I was until I was told the honest truth.  I felt like I could breathe, or maybe even do something for me.  Make a daily goal: take a walk, practice a little yoga, make something delicious or fun, or just do nothing!

GET HELP WHEN IT’S ALL OVER (because it isn’t really ever all over):

The saying “time heals all wounds” is only partly true.  When my mother passed I was, of course, still busy.  Ultimately, it was a relief, but a relief accompanied by such sorrow and regret.  I wish that I had used some of my “extra time” on speeding up the healing of my heart.  If you did not get help or counseling or whatever you needed then, get it now.  Find others who share your experiences if you have not already.  Read more about the whole process, including how to heal at the end.  Choose something that you couldn’t do before and do it now.  I think that a common fear for many people is to end up with this dreadful disease.  For those of us who experience it so personally, the fear is painfully real.  Although that fear can fade somewhat over time, it is always there.  I learned to heal with help from others, including lots of reading about maintaining a healthy lifestyle, but learning what you need personally is the secret to healing.

DO SOMETHING IMPORTANT:

I do believe that there is nothing more profound than personally finding out that there is really only one thing that makes us who we are.  Riches come and go, people fall in and out of love, we age gracefully or we wrinkle and go gray.

But at our core we are the one and only person on earth exactly like us.  Our lives are all different, our heritage is our own, and each story is unique.  With dementia, all of that is slowly lost.  One day at a time we find we cannot do things we used to do, we cannot find the words that express what we so desperately want to say, we cannot remember where to go.  Eventually, we forget the names of loved ones and, finally, in the cruelest twist, we cannot remember who we are.  Everything that ever mattered is gone.  Yet, it becomes clear that the only thing to do to fight this thief of life is to do good – help a little old man across the street, write a book, or place a wreath on the grave of a soldier.  Only you will know what to do, what matters, what will express the real you.  Think about it.  Decide what to do and do it.

One more thing, go ahead and write about it like I have here.  Nothing is worse than keeping it all on the inside.  So many of us don’t want to complain or burden others so we push it aside and soldier on.  I have not talked about the worst experience of my life in over eight years.  I cried once more as I wrote all of this down on paper and it feels so very good.

Marth is walking in the Denver Walk to End Alzheimer’s. Please consider donating to her team. 

The Alzheimer’s Association of Colorado provides a broad range of programs and services for persons with a dementia diagnosis as well as their caregivers. To learn more about services for caregivers, click here. For details on Caregiver Support Groups or Early Stage Groups, click here or call the Alzheimer’s Association’s free 24/7 Helpline at 800-272-3900.

Take a Shot at Fundraising for Alzheimer’s

When Devin Olsen was challenged to create a fundraiser as part of her internship at Life Care Center of Stonegate in Parker, Colo., the senior at Denver’s Metro State University was at a loss. However, witdevin-olsen.jpgh the memory of having lost both her grandmother and great uncle to Alzheimer’s disease, she had the inspiration. All it took was a nudge from a friend and Devin knew she would take a shot at it – in more ways than one.

Even though “Let’s Shoot Out Alzheimer’s” was both Devin’s first attempt at a fundraiser as well as her first time shooting, the Aurora resident hit the bullseye. The sporting clay shooting fundraiser, which she conducted recently at Kiowa Creek Sporting Club in Bennett, Colo., drew more than 70 participants, who each paid $100 to participate, along with 30 volunteers.

“When Life Care Center of Stonegate gave me an opportunity to raise money for Alzheimer’s, I had to jump in,” said Devin. The activities department intern credits 10 hard-working and eager committee members who helped her by gathering 28 silent auction items, seven live auction items and 30 raffle items.

Once the dust settles and pledges have been received, Devin estimates she will have raised more than $10,000 for a cause that is near and dear to her heart – and nearly double her target.

“I lost my grandmother, Marge, to Alzheimer’s in 2008 and great-uncle Ray in 2012, so I knew that an event raising money for Alzheimer’s was the right fit for me,” she said. “Not only have I lost people I love to this devastating disease, but I found out how it affects great people and their families everyday at the Life Care Center of Stonegate.”

After she graduates from Metro State this spring, Devin hopes to pursue her dream job in equine therapy, a form of experiential therapy that involves interactions between human patients and horses.

Devin is continuing to seek donations to her team, which is raising funds for Alzheimer’s care and research as part of the Denver Walk to End Alzheimer’s. Her Walk donation page can be found here.

Not Your Average Fundraiser: Lilly Templeton

dsc_2029.jpgA lot of kids start lemonade stands. A few of those donate some of their profits to charity. Only one in Colorado has emerged as a Grand Champion fundraiser for the Denver Walk to End Alzheimer’s.

At the age of 12, Lillian (Lilly) Templeton will be attending her ninth Denver Walk to End Alzheimer’s on Sept. 16 at City Park. Having raised just over $1,007 so far this year in memory of her grandfather, David Templeton, who passed away from Alzheimer’s disease five years ago, Lilly is the youngest Grand Champion for the Alzheimer’s Association of Colorado.

So far this year, 54 volunteers across Colorado have topped the $1,000 fundraising mark to earn Grand Champion status. Lilly, who raised $175 for the Alzheimer’s cause last year through her lemonade stand, isn’t awed by the numbers or daunted by the challenge. She has been volunteering for the Alzheimer’s Association along with her grandmother, Jane, since last year. And she’s been part of the Denver Walk to End Alzheimer’s since she was 3.

This year, Lilly decided to ramp up her fundraising a notch. After making a presentation to her class at Denver School of Science and Technology, she joined her father, Josh, at his office at ClickFox and made her pitch to his coworkers.

“I just went to my dad’s office and asked a lot of people from my dad’s work team for $20 or $25,” she said. When her efforts pushed her past her initial $300 target, she raised her goal to $500, and later to $1,000. Of course, it pays to be persistent.

“You need to try your best and follow up with people,” advises Lilly. “I send a follow-up email to everyone who makes an online pledge but hasn’t paid yet.”18670768_10154624549887671_8060951475942707476_n.jpg

Considering that Lilly, who lives in Denver’s Montclair neighborhood with her parents and younger brother, only began her 2017 fundraising campaign in early August, she’s made huge strides. She’ll be making many more come Sept. 16 when she joins with grandmother Jane and the rest of their family as the Wannabe Walkers proudly walk in memory of grandfather David, and raise funds to find a cure for Alzheimer’s disease – the No. 6 killer of Americans and the only leading disease without a prevention, treatment or cure.

Click here to support Lilly and the Wannabe Walkers.

A Doctor’s Guide to Dealing with Alzheimer’s Disease

Lesage_Suzanne_0648Alzheimer’s is a confounding disease, even for doctors. Salida (Colorado) neurologist Dr. Suzanne Lesage ought to know. Through her role with the Heart of the Rockies Regional Medical Center, she sees new patients who may be concerned about memory loss. Dr. Lesage also counsels others living with the diagnosis on how to best cope with a disease for which there is currently only treatment of symptoms but no cure.

In a recent informational session conducted for 50-plus community members by the Alzheimer’s Association of Colorado, Dr. Lesage joined fellow neurologist Dr. Yvonne Rollins and Ann Carter, regional director of the Southern Colorado Region of the Alzheimer’s Association, to discuss the basics of memory loss and dementia and answer questions regarding the challenges the disease poses for individuals, caregivers and doctors alike.

“Dementia is slow in developing,” said Dr. Lesage. “We can offer a diagnosis based on symptoms, but even under the broad umbrella of dementia, there are multiple types, including Alzheimer’s, vascular, Lewy body, frontotemporal and others, and some patients may be living with more than one.”

Doctor’s advice

Even with the uncertainty surrounding dementia, and specifically Alzheimer’s, Dr. Lesage counsels her patients and their families that there are specific steps they should take to ensure the best care for loved ones who are either dealing with a dementia diagnosis or have concerns about the disease:

  • Be proactive – “At the primary care level, people must be proactive with their doctors,” said Dr. Lesage. “There is a huge spectrum among doctors regarding their comfort level with dementia. Some feel – because there’s currently no cure – that there’s not much they can do.”

Because some doctors may be reluctant to issue a dementia diagnosis, there is a risk that they will not provide the guidance that families need to take appropriate steps.

“A diagnosis gives hope and clarity to the patient,” Dr. Lesage said. “At least they know what they’re dealing with.”

  • Free 24/7 Helpline – A referral to a neurologist can lead to a proper diagnosis, she said. The Alzheimer’s Association’s free 24/7 Helpline (800-272-3900) is another resource for direction.
  • Rapid Referral – Dr. Lesage is a strong advocate for the Alzheimer’s Association Rapid Referral program, which enables doctors to put the individual and their caregivers in touch with a full range of services – all at no charge – that physicians are not in a position to provide.

If there is concern about or discussion of dementia, or Alzheimer’s in particular, Dr. Lesage said there are specific subjects that she raises with her families that should be addressed with the primary care physician, including:

    • Medications that may provide some benefits
    • Counseling for the individual and family
    • Driving considerations and potential restrictions
    • Medical power of attorney and when it should be transferred
    • Types of in-home and residential care that families can consider
    • Opportunities for financial assistance
    • Referrals to support groups, like those provided by the Alzheimer’s Association of Colorado
  • Get support – Caregivers need to understand that they do not have to face this situation alone. In addition to support groups, families can reach out to their regional Alzheimer’s Association of Colorado office or call the free 24/7 Helpline to schedule a Care Consultation. In addition, there is a broad range of resources available in terms of educational information, message boards, classes, clinical trials and newsletters from the Alzheimer’s Association, all provided to the public at no charge.

In addition, Dr. Lesage said that individuals should rely on their primary care physician for medical information and guidance.

  • Continue living – Dr. Lesage emphasizes that an Alzheimer’s diagnosis doesn’t mean the person’s life is over. She stresses that there can be significant quality of life, even later in the disease’s progression. She notes that she has helped devise travel plans for families where a loved one has advanced Alzheimer’s. “Even if they don’t remember the trip, they can enjoy the day,” she said, adding that new memories are created for loved ones.

“The goal I set is for my patients with dementia to stay in the home until it’s time for them to move into hospice care,” said Dr. Lesage. “It’s not appropriate for all, since caregiving capacity is very individual but, for many, there is still good quality of life close to its end.”

 

Latina Alzheimer’s Caregiver Has Three Strikes, But Won’t Stop Swinging

There’s days when I cry, days when I’m mad, and days when I’m going to do something about it

Cindee Sanchez Gierhart is breaking stereotypes and defying expectations, not because she wants to, but because it needs to be done.

Cindee is a Greeley-born and Pierce-raised Latina (“we call ourselves ‘native’”) who is living with an unenviable legacy: her family on both sides is prone to developing Alzheimer’s disease. Her father is living with it and his father and grandmother died from it. Her mother and her mCindee Gierhart & mom in Greeley 7-2017other’s 95-year-old mother are both living with the disease, and her great-grandmother died from Alzheimer’s.

And Cindee is on the caregiving team for both parents and her grandmother.

Anyone who cares for a loved one with dementia knows what a drain the experience can be. Caring for three is above and beyond the call of duty, defying expectations.

As for stereotypes, Cindee is defying a cultural tradition: Latinos care for family members at home, even with a disease as debilitating as Alzheimer’s. And they don’t talk about it.

“Our community hides it, especially from children,” observed Cindee. When Cindee and her sister attended a recent Alzheimer’s Association of Colorado event specifically aimed at the Latino community, the sisters looked at one another when the ‘secrecy’ topic was broached and said to one another: “that’s our family.”

Even though Latinos are 50 percent more likely than whites to be diagnosed with Alzheimer’s, there is still a stigma surrounding the disease. It doesn’t get discussed publicly, and the situation is handled inside the home.

“It’s great for the facts to be said out loud,” Cindee said about the higher risks Latinos face from Alzheimer’s, “but those who put family members in care facilities are still ostracized.”

The cultural challenge of Alzheimer’s

The youngest of five siblings who range from 44 to 49, Cindee wrestles with the expectations of her family members. Realizing the magnitude of dealing with multiple family members with dementia, she helped get her mother and grandmother placed in care facilities. Her father still resides at his home with Cindee’s stepmother. Cindee and her stepmom have already considered the changing aspects of her dad’s future with Alzheimer’s and have obtained a power of attorney and medical power of attorney.

But taking responsibility for ensuring the welfare of loved ones is not the same as meeting expectations.

“In my family dynamic, everyone has input on critical situations,” Cindee said. “At times, tensions ran high and not all of us were sure how care should be provided.” Ultimately, Cindee partnered with her oldest sister and stepmother to put the family wishes into action.

“I’ve got too many people to care for to worry about what other people think,” she said. “When dad and mom were getting their diagnoses, we were in emergency mode and only a few of us could help out. I quickly realized that my family is traveling the same path; we’re just not in the same place at the same time. We’re in different stages of grieving.”

Knowledge is power

When Cindee learned of her parents’ diagnosis and saw the pattern with older family members, she immersed herself in the topic of Alzheimer’s disease.

“I’m a scholarly person,” she said. “I want to investigate and research.” That led her to research the topic online, explore the Alzheimer’s Association website (www.alz.org/co) and even sign up for TrialMatch, the Alzheimer’s Association’s system for matching individuals with ongoing research trials.

It wasn’t until Cindee met Kelly Osthoff, director for the Alzheimer’s Association’s Northeast Colorado regional office, that she began to fully understand the breadth of services that would benefit her and her family.

“In the past few months, I’ve taken ‘Introduction to Dementia,’ ‘Living with Alzheimer’s: For Early Stage Caregivers’ and then ‘Effective Communication Strategies,’” she said. “The communication class is very beneficial, particularly in the early stages when your family members are still high-functioning. You can’t tell what they’re really thinking, and it’s so easy to get offended. My feelings get hurt so easily. The class helped me understand that the communication aspect of what my mom and dad are trying to tell me is not what I’m hearing.”

Even with that immersion, Cindee admits “I don’t feel like I’ve scratched the surface of the classes and groups” the Alzheimer’s Association offers. She has just begun to get engaged with a support group, and found the experience “a healing – and very emotional, but it’s hard to step out of your comfort zone and let others see you so emotional. It’s good to see there are other people trying to take care of their mother or grandmother, praying for the same things I’m going through.”

Seeing herself as ‘fortunate’

While no caregiver for a loved one with Alzheimer’s would see themselves as fortunate when faced with three family members living with the disease, Cindee does manage to describe herself that way. The fact that her husband is 100 percent supportive of her caregiving, and his job enables her to devote extensive time to caregiving without taking a job outside of the home, gives her the flexibility that many others do not have – even considering that Cindee also cares for three children of her own.

“If I had a job, I would have had to quit when my mom’s condition changed so quickly,” she says. “There’s days when I cry, days when I’m mad, and days when I’m going to do something about it.”

Cindee decided to do something about it recently. In observance of The Longest Day, the Alzheimer’s Association’s annual fundraiser that recognizes that every day of living with Alzheimer’s is ‘the longest day,’ Cindee went on a 13-mile hike. Also, her stepmom created a family team for the Alzheimer’s Association Walk to End Alzheimer’s.

“It’s immeasurable healing for my family to do this together,” she said. “I want The Longest Day and the Walk to End Alzheimer’s to be events that get my family, especially my siblings, into this fight with me a little more.

“My siblings and I were all so close, and then everything happened at once. It broke us,” Cindee added, with tears in her eyes. “I feel that right now, we’re all healing a little bit more, but our relationships can never be the same because our parents are going through this. This disease has stolen our parents, our grandparents and our great-grandparents, and our positions as daughters and son. We are now caregivers to our parents, and it feels like our place as children is null and void.”

Doing something about it

Cindee will not stop at being a caregiver. She has become an evangelist. She is passing out cards to family and friends with the phone number of the Alzheimer’s Association’s 24/7 bilingual Helpline (800-272-3900). She is constantly spreading awareness of Alzheimer’s in everyday conversations. And she’s looking forward to participating in more educational programs and support group sessions to both learn more about the disease and to learn to deal with a stress level that is “something I’ve never experienced before in my lifetime.”

Cindee is already looking ahead to the Greeley Walk to End Alzheimer’s, set for Sept. 30 at Bittersweet Park. Her family’s team is Sanchez Family. The 11 Walks to End Alzheimer’s around Colorado are the primary fundraising tool for the Chapter to continue offering educational programs and services at no charge to Colorado families.

In the meantime, Cindee and her husband, Dennis, are celebrating their 15th anniversary. And, wasting no time, she’s already picked out the title for the book of her life: “Juggling Absolute Craziness.”

Memories in the Making Class Excavates Stories

by Lynn S. Schwebach

As an artist, I thought a painting class with Alzheimer’s patients an appropriate way to apply my skills as a volunteer while spending time with my mom who suffers with dementia, but I quickly discovered that a Memories in the Making class entails much more than simply painting colorful pictures.

MIM painting
My mom participating in a Memories in the Making art class.

Unlike traditional art classes, the Alzheimer’s Association of Colorado Memories in the Making (MIM) class does not stress the finished product but the experience the artists have as they create, and the memories that their painted images unlock and bring to the surface.

Sometimes no words

The underlying reason for MIM, however, does parallel what drives most visual artists: self-expression. Those who suffer with dementia lose the ability to find and use words, so the painting process employed in MIM helps release emotions, frustrations and memories trapped within dementia patients.

By sitting down once a week with memory care or nursing home residents, those trained in MIM are able to help patients communicate with colors, lines and symbols. The class does not emphasize traditional drawing skills but emphasizes images — most abstract — as a means for telling others who they were and who they still are. Unlike arts and crafts activities, each MIM painting is unique — an expression of the individual artist.

“Even after people with dementia have lost the ability to use words, they are able to create paintings that reflect their thoughts, emotions and memories in a manner that is expressive and beautiful,” according to the Alzheimer’s Association. “Art can become their voice.”

Over the past 7 months, I have heard participants in MIM classes suddenly talk of their children when they were young, of countries of origin, of barns and tractors that they and family members drove, and the experience of marching in the army during World War II. Because my mom lives with these individuals and I observe them almost daily, I know that these communications are not the norm.

Artist-grade supplies

Also during my first months of volunteering, I noticed the impressive quality of the art supplies the MIM facilitator used. This included 140-pound acid-free, cold-press watercolor paper, artist’s watercolor brushes, pencils, markers and high-quality pan watercolors such as Pelikan, Talons and Lyra.

After going through training by the Alzheimer’s Association of Colorado I learned that MIM care communities only use quality watercolor products because these products give artists the best outcome — often a treasured painting that families or organizations want to save.

The trainer talked of a painting done in the early years (early 1990s) of MIM in Orange County, California, where an artist in a MIM group surprised everyone with a colorful painting in memory of her family’s journey west in a covered wagon when she was 3 years old. She drew her brother and herself under the wagon along with detailed directional signs and symbols. It was a painting they wanted to keep, yet because they used cheap newsprint and construction paper, the artwork faded and yellowed. From that point forward, MIM classes only use artist-quality materials.

MIM class
Me and my mom. Memories in the Making class.

Stories form identities

One of my favorite aspects of each class involves hearing stories like the covered wagon journey.  Hearing the stories reminds me why I’m an artist. Stories comprise each of us and our humanity. They inform each of my paintings.

Somewhere toward the middle or end of the painting, I begin asking the MIM artist to share with me what his or her painting means. Sometimes this takes some prodding and creative questions to get responses. It might start with a the simple question of “what should we name the painting?”

If the artist has a story to tell, we write it in pencil on the back of the painting in pencil. In addition, we write his or name, the date, facility where completed, the facilitator’s name and a directional arrow indicating the top of the painting.

But even if a specific memory isn’t brought to the surface by the painting, MIM initiates so many other benefits, including giving dementia patients an opportunity to socialize, and stimulation that improves mental alertness, visual memory, concentration and imagination.

Activities like MIM are central to addressing the symptoms of a disease that hasn’t a cure. The Alzheimer’s Association states that Alzheimer’s “is not a normal part of aging. Alzheimer’s is a progressive and fatal brain disease.”

In the U.S. alone, 5.5 million people live with its debilitating effects. According to the Association, someone develops Alzheimer’s every 66 seconds. It predicts that by 2050, up to 14 million Americans will have the disease.

Most of us will have a family member, friend or acquaintance suffer with Alzheimer’s. MIM does not teach but provides a tool for communication for families and professional caregivers to learn more about family members and patients, and how best to treat those suffering with this disease.

It is one of the most rewarding art classes I have taught. And like most volunteer positions, the experience has given me much more than I can possibly offer. It has provided me with education on this disease, which affects my family and which I knew so little about. It affirms my belief that creativity is important to everyone and that its benefits go well beyond completing the perfect piece of art. And it adds to my story, one where connection and listening go hand in hand with a meaningful existence.

I took the Memories in the Making training class sponsored by the Colorado Chapter of the Alzheimer’s Association. To learn more, call the Association at (303) 813-1669.

Lynn Schwebach’s blog is bravelycreative.