Farewell to a Colorado Alzheimer’s pioneer

DeeAnn Groves became an Alzheimer’s caregiver out of necessity, but she remained one for decades out of compassion for those whose loved ones lived with the incurable disease.

For nearly 40 years, DeeAnn devoted her time, energy and resources to caring for those affected by Alzheimer’s. While caring for her own mother who was living with the disease, DeeAnn started Senior Resource Services in Greeley, which later evolved into the Northeastern Colorado office of the Alzheimer’s Association.

Over the years, DeeAnn established support groups for Alzheimer’s caregivers, adult children of dying parents, and Parkinson’s disease. In fact, she was active as an Alzheimer’s support group leader even in the week preceding her death in February of 2019 at age 85.

“I knew DeeAnn from the very beginning of my work with the Association in 1989,” said Linda Mitchell, longtime president and CEO of the Colorado Chapter of the Alzheimer’s Association. “When our chapter started to expand statewide, she was very supportive of our first office and staff in Greeley.”

Mitchell, who served the Association for more than 25 years before her retirement at the end of 2016, credited DeeAnn for helping educate her about the needs of Alzheimer’s families.

“There could be no better Alzheimer’s advocate than DeeAnn,” said Mitchell. “She remained a tireless volunteer and advocate for the Alzheimer’s cause to the very end.”

Iora: Partnering with the Alzheimer’s Association in search of a cure

Iora Primary Care is focused on serving the healthcare needs of people ages 65 and older. Given the increasing risk of dementia as we age, that makes Iora’s connection with the Alzheimer’s Association a natural fit.

“When our patients and their loved ones have concerns, we complete a diagnostic workup, and then provide them with resources that address their functional and mental health needs, such as Alzheimer’s Association caregiver support groups,” said Weston Donaldson, Ph.D., behavioral health specialist at Iora.

A sponsor of the 2019 Walk to End Alzheimer’s on Saturday, Sept. 14, in Denver’s City Park, Iora will have a team of healthcare providers, health coaches, leadership members, patients and their families at the Walk to raise funds to support the education, programs and services of the Alzheimer’s Association, and to help find a cure for the disease.

An estimated one of every three senior citizens in the United States who pass away in a given year had been diagnosed with Alzheimer’s or another form of dementia. It kills more than breast cancer and prostate cancer combined. Only 16 percent of seniors receive regular cognitive assessments during routine health check-ups. This, in turn, forces caregivers to provide an estimated 18.5 billion hours of annual voluntary, unpaid care valued at nearly $234 billion dollars. 

“We are proud to sponsor an organization that envisions a world without Alzheimer’s disease,” said Donaldson. “Iora is equally focused on the same cause. Every one of our team members and employees is committed to helping people live their happiest, healthiest lives. Some of our patients are affected by dementia and our care teams search for ways to help with the symptoms. Beyond the services of a ‘traditional’ doctor’s office, we go above and beyond for these patients as we have interactive, social group activities, such SilverSneakers, knitting groups, meditation, healthy cooking and more, that help provide a sense of purpose and community involvement.”

When specifically looking at dementia care, Iora involves family and friends in devising care geared to the individual.

“We recognize that supporting a patient with memory concerns necessarily involves working with families and others in the patient’s life,” said Doug Golding, M.D., market medical director for Iora. “We work with all involved to help meet the patient’s goals through this life transition.”

To learn more about Iora Primary Care, go to: www.ioraprimarycare.com.

Family-run Morrell Printing wants to help Colorado families

Family-owned and operated Morrell Printing Solutions views itself as more than a business. It’s part of the Lafayette community.

So when long-time customer Paula Selland kept returning with printing projects related to her fundraising for the Alzheimer’s Association, Morrell staff decided it was time to get on board.

Selland has a deeply personal commitment to the cause. Her mother, Marilyn Joy Selland, began showing symptoms of Alzheimer’s in 2004. Her formal diagnosis followed three years later, and she finally succumbed to the disease in February of 2017. Marilyn’s husband and caregiver, Ernie, passed away five months later of a broken heart.

Selland founded Team Joy as part of The Longest Day fundraising program of the Alzheimer’s Association, both to honor her parents and to raise awareness of a disease that is the sixth-leading cause of death in the United States, and the only leading disease without a prevention, treatment or cure.

In support of Selland and Team Joy, the employees of Morrell Printing started their own fundraiser in 2018 and are continuing it this year, encouraging their customers to join in the effort to raise funds to support Alzheimer’s disease awareness, education, programs and research to find a cure.

“We are a family-run business started by my parents in 1975,” said Kristel Pierce, co-owner of the shop with her three brothers. “We are committed to supporting community activities. We got involved because of Paula and her story with her family. She is a good customer and friend of ours, so we wanted to show her support.”

Morrell Printing has created its own web page to support Team Joy. In addition, the company’s 15 employees (seven are part of the immediate family) wear The Longest Day shirts to help raise awareness, both of the disease and the fundraising initiative.

“The efforts of Morrell Printing and Paula Selland’s Team Joy are great examples of our community coming together to shine a light on the 5.8 million Americans living with Alzheimer’s disease and the more than 16 million family members and friends providing their care,” said Kate Dochelli, development manager for The Longest Day in Colorado.

“The Longest Day is the Alzheimer’s Association’s fundraising event based on and around the summer solstice, June 21,”said Dochelli. “Advocates from across the world come together to fight the darkness of Alzheimer’s through an activity of their choice – biking, hiking, playing bridge, swimming, knitting and more.”

Every 65 seconds, someone new in the United States develops Alzheimer’s disease, which kills more people than breast and prostate cancers combined. More than 73,000 Coloradans are living with the disease among 47 million globally.

The Alzheimer’s Association provides disease information, education, programs and services to all Colorado families at no charge. It also is the world’s largest non-profit funder of research to find a cure for Alzheimer’s disease.

Individuals seeking information or support can call the Association’s free 24/7 Helpline at 800-272-3900. It is staffed by trained professional counselors. Information is also available at www.alz.org/co.

Alzheimer’s disease: it’s personal at Vizient

This is the third year that employees from the Centennial office of healthcare performance improvement firm Vizient, Inc., will be having fun and raising funds to find a cure for Alzheimer’s disease, but it’s a company initiative that was driven by one person’s commitment.

“This effort has morphed from personal to office-wide,” said Jason Pettis, infrastructure engineer for Vizient and spokesman for the company team. “The father of Kathy Eckert (Vizient’s Operations Project director) passed away with Alzheimer’s,” which motivated her to engage with the Colorado Chapter of the Alzheimer’s Association and raise funds for The Longest Day.

“The Longest Day is the Alzheimer’s Association’s second signature fundraising event based on and around the summer solstice, June 21,” said Kate Dochelli, development manager for The Longest Day in Colorado. “Advocates from across the world come together to participate in The Longest Day to fight the darkness of Alzheimer’s through an activity of their choice – biking, hiking, playing bridge, swimming, knitting and more – to shine a light on the 5.8 million Americans living with Alzheimer’s disease and the more than 16 million family members and friends providing their care.”

Last year, more than 25 Vizient staff in Colorado each conducted their own individual activities to raise funds for The Longest Day, and then gathered for a day of fun, including hiking, biking, tai chi and games with friends, family and coworkers. Collectively they raised more than $7,000 to support Alzheimer’s Association educational programs, services, and research to find a cure for the sixth-leading cause of death of people in the United States.

“Vizient’s involvement in The Longest Day helps create awareness,” said Pettis, who also has a family connection to the disease. “It’s a quiet disease. Bringing exposure to it gets people talking and creates awareness in the community of resources available through the Alzheimer’s Association.”

Pettis noted that people who have Alzheimer’s disease in their family have a tendency to look inward, believing that “no one could possibly understand or know” what they’re experiencing.

“People need to feel more comfortable reaching out for help,” he said.

Vizient’s The Longest Day fundraising goal for 2019 is to top $10,000 – and to help find a cure for the only major disease without a prevention, treatment or cure. To support Vizient’s The Longest Day team, click here.

Report on heart risk for Americans raises Alzheimer’s concerns

A report issued this week with estimates that 121 million U.S. adults are living with cardiovascular disease raises significant concerns about a related risk: Alzheimer’s disease and other forms of dementia.

The report issued by the American Heart Association notes that nearly half of all U.S. adults have some form of heart or blood pressure disease. The vast majority of those include high blood pressure, which recent research has proven creates an elevated risk of Alzheimer’s disease.

The Journal of the American Medical Association on Jan. 28, 2019, published the results of the SPRINT MIND study, “Effect of Intensive vs. Standard Blood Pressure Control on Probable Dementia,” which showed that intensive medical treatment to reduce blood pressure can significantly reduce the occurrence of mild cognitive impairment (MCI), a known risk factor for dementia.

“Everyone who experiences dementia passes through MCI,” said Amelia Schafer, executive director of the Colorado Chapter of the Alzheimer’s Association. “What is good for the heart is good for the brain and, conversely, if we don’t take care of our heart, we are putting our brain and our mental health at an unnecessary risk.”

The SPRINT MIND study was the first randomized clinical trial of its kind, and it found a 19 percent reduction in risk of MCI when the systolic blood pressure goal was lower than 120 mm Hg. versus a standard care strategy target of 140 mm Hg. It was led by Dr. Jeff Williamson from Wake Forest University.

Because of the success of the original SPRINT MIND study, the Alzheimer’s Association recently announced it is providing seed funding for a two-year extension of the trial to expand the trial’s base and increase the follow-up and assessment, allowing for a more definitive statement on reducing risk of dementia.

The Association also has launched a parallel two-year clinical trial, U.S. POINTER, which will evaluate whether lifestyle interventions can protect cognitive function in older adults at risk for cognitive decline. Those interventions include physical exercise, nutritional counseling and modification, cognitive and social stimulation, and improved self-management of health status.

“While the Alzheimer’s Association is continuing to lead the way in research to find a cure for Alzheimer’s, these studies are essential because they show that there are steps that each and every one of us can take to reduce our risk of cognitive decline,” said Schafer. “The implications, both in terms of improved quality of life as well as reducing healthcare costs, are enormous.”

The Alzheimer’s Association is the world’s leading nonprofit funder of Alzheimer’s and dementia research. The Association currently has more than $160 million invested in over 450 active projects in 25 countries around the world.

Colorado advocacy champion profile: Ashly Johnson

The Alzheimer’s Association is expanding its effective grassroots advocacy effort from the national level to include state-level legislators. In Colorado, the Association is recruiting Alzheimer’s State Champions to interact with each state legislator at key times throughout the year to ensure they are well-versed on the implications of any proposed laws that would affect Alzheimer’s families.

Among the first Colorado Alzheimer’s State Champions is Ashly Johnson of Denver, a staff member with the Denver Regional Council of Governments (DRCOG), a former intern at the Colorado Chapter, and someone who has seen the effects of dementia in her own family.

“My grandfather had dementia, which was not formally diagnosed, but we would go to see him every day in the nursing home and when he was on hospice care,” said Johnson. She wants to take those first-hand experiences and share them with elected officials so that they understand the impact Alzheimer’s and dementia have on Colorado families.

“I think the people who are in the community and experiencing this disease (caregivers or persons with a diagnosis), their stories and struggles and experiences deserve to be heard,” said Johnson.

Reflecting on her internship at the Alzheimer’s Association while earning her master’s degree in social work at University of Denver, she said: “I learned so much from taking Helpline calls and sitting in on support groups, it is clear to me what we should be working for through change. It’s important for people’s stories to be heard. It’s important to educate people and start the discussion.”

Through her work with DRCOG, Johnson helps people who are living temporarily in skilled nursing facilities and want to move back into the community. She helps them explore options regarding housing, home and community-based services.

“There is an overlap between what we do and the Alzheimer’s Association in terms of caregiving, in helping ensure there’s support for caregivers and getting more Medicaid beds, which is a step down from skilled nursing,” she said. “There is a big overlap between older adults and people with disabilities and those living with dementia. A lot of the same legislation serves both communities.”

Johnson has attended several Alzheimer’s Association advocacy days at the Colorado Capitol, met as part of a group with state legislators, and introduced herself to her newly elected state legislator, Julie Gonzales, to let Gonzales know that she will be hearing from Johnson in the future about Alzheimer’s disease-related issues in the future.

The Alzheimer’s Association federal advocacy program has been enormously effective, helping raise awareness of the disease in Congress. Over the past five years, federal funding for Alzheimer’s research has more than quadrupled to a projected $2.3 billion in the coming year.

Colorado’s director of Public Policy and Advocacy, Coral Cosway, notes that the state champion initiative is an effort to create the same level of awareness on a local level so that when legislation is proposed that can affect the quality of life for persons living with dementia or their caregivers, Colorado legislators can make decisions based on a clear understanding of the issues.

“Working as a state champion doesn’t have to take a lot of time,” said Johnson. “For me, the in-person meeting seems a bit intimidating, but contacts also can be done through phone calls and emails. The key is letting your legislator know what’s important to you as a constituent.”

For Johnson, the true value of being an advocate is sharing her personal experience with the disease.

“Not everyone has an understanding of Alzheimer’s or dementia,” she said. “If you’re going through it, you are the expert.”

To learn more about volunteering as a State Champion for the Colorado Chapter of the Alzheimer’s Association, contact Cosway at ccosway@alz.org or 720-699-9276. To fill out an advocacy volunteer application, go to https://alzimpact.org/volunteer

Holiday gift ideas for people with Alzheimer’s and their caregivers

Holidays can be stressful enough, but when you add in a person living with dementia, gatherings with family and friends become more complex. After months apart, symptoms of dementia, including memory loss, may become clear. For the person living with the disease, anxiety may increase in a crowd where there’s lots of noise and conversation, and unfamiliar surroundings may reveal challenges that don’t exist at home.

Finding the right gift under these circumstances can be more challenging. The Alzheimer’s Association offers a caregiver holiday guide that shows how, with careful planning, family celebrations can 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 scrap booking 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
  • Enroll the person in Medic Alert+ Safe Return, a 24-hour nationwide emergency response service for wandering and medical emergencies.

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
  • Purchase a DVR so the caregiver can record favorite shows or sports programs that he or she may not be able to watch in real time due to care responsibilities

The Alzheimer’s Association Colorado Chapter covers a 64-county area with 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 320,000 Coloradans affected by Alzheimer’s disease, including more than 71,000 people living with the disease.

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

United States of America’s Miss Colorado Pageant Finalist is an Alzheimer’s Champion

An only child, Sylvia Waller would frequently call her father for advice. Then, about three years ago, she realized their conversations were becoming increasingly disjointed.

“We weren’t connecting anymore,” said Sylvia. As time passed, he could no longer answer her questions and even routine conversations became more difficult.

Sylvia’s father had dealt with a variety of health issues since his wife – his childhood sweetheart – passed away 12 years earlier. Kidney disease and heart failure were among the challenges, but there also was a family history of Alzheimer’s disease.

A CAT scan confirmed Sylvia’s worst fear. Alzheimer’s was ravaging her father’s brain, stealing his memories and his health.

James Fountain, Sylvia’s father, passed away at age 76 in April of 2017, about three years after she first detected the symptoms.

“Dad was my hero…my everything,” said Sylvia.

To honor her father, and to utilize the position as a platform to raise awareness of Alzheimer’s disease, Sylvia decided to compete in the 2019 United States of America’s Miss Colorado Pageant. Competing as Mrs. Aurora (the competition has categories for Teen, Miss, Ms. and Mrs.), Sylvia will vie for the statewide crown Jan. 13, 2019, at the Broadmoor Resort in Colorado Springs.

Every contestant selects a charity that is important to them, and Sylvia has chosen the Alzheimer’s Association in memory of her father.

“As an advocate for the Alzheimer’s Association, I would like to become a voice to seek change; to raise awareness, facilitate early investigation, diagnosis and treatment,” she said. “I want to seek ways to improve services for people with dementia and their families.”

There is a critical need for raising awareness in the African American/Black community, where Alzheimer’s diagnosis rates run twice as high as the general population. High blood pressure and heart health play a role in those higher statistics.

“I am sorry that I was not aware of all of the invaluable programs and services that the Alzheimer’s Association provides to Colorado families at no charge while we were caring for my dad,” said Sylvia. “In honor of my father, and recognizing the Alzheimer’s history that runs through my family, I feel it is important for me to use my voice and this platform to create awareness of this disease and the tools we have available through the Alzheimer’s Association to cope with it.”

The United States of America’s Miss Colorado competition includes a personal interview, swimwear competition, evening gown competition and onstage question. The pageant’s mission is “to build a community of passion-driven women who invoke change and are making an impact in their communities. “There also is a component called “People’s Choice” that allows the public to vote on their favorite contestant.A portion of the proceeds from the voting will go to the charity identified by the candidate – the Alzheimer’s Association for Sylvia Waller.

Alzheimer’s caregiving: every situation is unique

People who care for a loved one with Alzheimer’s or another form of dementia soon learn an important lesson: do not assume you understand what is happening, or that you have “mastered” caregiving.

Alzheimer’s is a progressive form of dementia. It relentlessly erases memories as well as the individual’s ability to care for him or herself. Eventually, it steals their life. Sadly, while research is ongoing, there currently is no prevention, treatment or cure, so the disease continues, ruthlessly decimating the individual.

Each caregiving experience is unique. Dementia does not progress at the same rate in every individual. Individuals have been known to live for 20 or more years with dementia, while others pass within a few brief years. The average is estimated at 8 years. And each form of dementia (including Alzheimer’s, Lewy body, Vascular, Frontotemporal, and dementia resulting from Huntington’s or Parkinson’s disease) offers its own unique challenges.

A few numbers

To set the stage, here are a few basic numbers: there are 47 million people around the world living with some form of dementia…nearly 6 million of them in the U.S. and 71,000 in Colorado. Volunteer, unpaid caregivers are a primary source of care for them. In the U.S., nearly 14 million people (two-thirds of them women) provide care for loved ones. In Colorado, there are about a quarter of a million unpaid caregivers.

Last year, these U.S. caregivers donated 18.4 billion hours of time and energy valued (at $12.61 per hour) at $232 billion – 10 times the total revenue of the McDonald’s restaurant chain.

The human side of the story

Several Coloradans – all current voluntary caregivers – have offered to share some of their personal experiences from their own caregiving journey.

  • Deb Crandell, Severance – Deb has cared for her husband, Jerry, since he began showing signs of dementia in 2011. He was officially diagnosed in 2015, and is now in late-stage dementia.

“I hope this will be a help to others. However, my strength and support has mainly been very faith-centered. I see so many caregivers falling apart and/or very unhappy. Many see no benefit in advice because of the seeming hopelessness of the disease. I find purpose in what I am going through and take care of my husband as unto the Lord.” Following are some of Deb’s thoughts on the caregiving experience.

  • Her biggest caregiving challenge: “There are so many challenges, and these challenges change with every new decline. The biggest challenge is probably accepting these declines and finding ways to keep my loved one content and myself positive.”
    • The importance of support groups: “I find something valuable in almost every support group meeting. Sharing this experience and being willing to challenge myself to grow and accept each new normal helps me realize that life is still good.”
    • Helping others in support groups: “We are always helping each other. Sharing my faith has helped some see that God loves us and trusting Him gives us the strength to keep going.”
    • Anything in the caregiving experience you wish you could have done differently: “Ithink I would get help with the grieving process sooner to reach acceptance.  I still grieve, but the acceptance stage makes life doable and even joyful.”
    • Advice to offer others who become caregivers: “The advice I give changes as to the stage of the disease. When my husband could no longer communicate easily, I started to ‘ping pong’ conversation with him. I stopped worrying about understanding him. I would take a word I understood and say something using that word. He would respond, and I would repeat the process with another word.He assumes I understand him, and I am no longer anxious. Also, it is important to realize that people with dementia cannot manage their own mood, and we caregivers need to do it for them by managing our mood.”
    • Working while caregiving: “I stopped working in May of 2014 to take care of my husband even though there had been no official diagnosis.”
    • Support from family and friends: “I have great support from family and friends. The leader of our memory cafes took the time to talk to my children and spouses about the disease and how to use Contented Dementia (an approach to dementia care) to keep my husband at home and contented.”
    • Advice to others just learning about or wondering about a diagnosis? “My advice is to get support and know this is doable. You can still enjoy life.”
  • Dr. Rich Glasser, Denver – For the past six years, Dr. Glasser has been caring for his wife who is living with Lewy body dementia. He still works actively as a physician, and is active in a Lewy bodies support group as well as a men’s Alzheimer’s support group where he provides personal caregiving and medical insights to help other caregivers. Following are some of his thoughts on the caregiving experience.
    • Advice to others who may be facing a dementia diagnosis in a loved one: “Read and learn as much as you can if the diagnosis is firm, and seek a diagnosis if it’s not clear. Understand that doctors don’t like giving this news to patients or families.”
    • What is the biggest challenge you’ve faced as a caregiver? “Deciding it was time for a nursing home. Facing the fact that she’ll never live with me again.”
    • What have you learned from other caregivers that you found valuable? “Try to accept what I can’t control – an impossible task.”
    • Has your experience as a caregiver been useful to another caregiver? “Providing advice on when to take the car away (from a person with dementia), and advice on medications – as a physician, I understand the medications.”
    • Looking back, are there any things in your caregiving experience you wish you’d done differently? “Listen to the speech therapist who knew where this washeading.”
    • What one piece of advice would you offer to others who find themselves caring for a loved one with dementia? “Line up and use support if offered, but know that no one can match your care.”
    • Being a working professional and caregiver simultaneously creates unique challenges.How did you make that work? “I had to cut back my daily schedule earlier, but if I didn’t, I couldn’t see my wife daily. It hurt the practice, but I could not forgive myself if we lost the time together.”
    • Did you receive support from family and/or friends in caregiving? “Very limited when my wife was home with me.”
    • Your medical training is clearly beneficial to others in your support groups. Does your training change your approach to your own caregiving role? “I am more forceful in asking for care changes. I am very deliberate with giving input and my desire in care for my wife.”
    • Any final thoughts on the challenge of caregiving? “It is most difficult to remember to take care of the caregiver. Before my wife entered the nursing home, I was past exhausted. I hated putting her in, but I could not care for her safely if I couldn’t take better care of her.”
  • Kathy Risden, Highlands Ranch – Kathy’s caregiving experience has involved a number of complicating factors. Kathy was a human resources director at a Colorado IT company when her sister was diagnosed at age 52 with young onset Alzheimer’s in late 2012 in her native Illinois.

“Since there is no family history of Alzheimer’s disease, this diagnosis completely blindsided me and my family,” said Kathy. Working with her parents, Kathy assisted her sister in establishing her will, medical and financial powers of attorney, and advanced directives. Since her sister had joint custody of two teenage children, Kathy quit her own job to enable her to travel to Illinois – anywhere from one to three weeks per month – to care for her sister and her children. She returned for stretches to care for her own family in Colorado.

Kathy managed her sister’s agency caregivers from 2013 until her placement in a memory care community in June of this year, including agency sourcing, agency selection, caregiver interviews, caregiver training and scheduling. She also has managed multiple real estate transactions and all medical needs for her sister. All the while, she worked to educate herself on the disease “so that I could be a better caregiver for my sister.”

Kathy, who is an active volunteer for the Alzheimer’s Association in Colorado, offers these caregiving lessons:

  • “It’s OK to take care of yourself too. You need to be your best self so that you can take care of your loved one.”
    • “Be flexible and don’t sweat the small stuff.When confronted with a challenge, ask yourself: ‘does it matter?’ If the answer is yes, address it. If no, let it go.”
    • “Give yourself permission to make mistakes and forgiveness so that you can move forward.”
    • “Count your blessings every day.”

Centennial couple prepares for next step in Alzheimer’s journey

Two years ago, Centennial couple Barb and Harold Arnold surprised many of their family and friends by sending out the first Christmas letter of their 41-year marriage. It wasn’t your routine “where did we go on vacation” letter. In it, the couple revealed Barb’s Alzheimer’s diagnosis.

Today, the couple is issuing their third holiday missive with another surprising update: Barb is moving to a nearby memory care facility. While the news will be startling to some, the Arnolds want friends and family to know that they’re entering into this decision as a team with their eyes wide open.

“Barb deserves the best,” said Harold, holding his wife’s hand as they discussed the conclusion they reached jointly after months of deliberation. “I can’t tell you how much better I feel. If something should happen to me tomorrow, Barb will be taken care of.”

As they have throughout their 43 years of marriage, the Arnolds approached the subject as partners. They have visited nearly a half dozen memory care facilities over the past six months, but the time wasn’t right. However, as Harold reached age 85, he wanted to ensure that Barb could receive the around-the-clock care he no longer felt he could guarantee on his own.

The couple has adapted. He installed a tracking app on his wife’s phone so he could find her on those occasions when she might wander, but she didn’t always remember to carry her phone. So he bought her a smart watch with similar tracking capabilities, and it recently helped him locate her several blocks away, resting against a tree, too tired to come home without assistance. That helped confirm for him that the time was approaching for a change.

“That’s magic”

In recent years, the Arnolds have enjoyed long walks – keeping them active andhelping Harold as he recovered from a heart attack. Their route would take them several miles to Centennial’s DeKoevend Park, a scenic spot a mere two blocks from where Barb and her children lived 45 years ago when Harold was courting her. There, they enjoyed walking and cross country skiing, and had their favorite bench for resting.

Recently, a new memory care facility, Cherry Hills Assisted Living and Memory Care, was built overlooking DeKoevend Park, and the couple visited it several times, taking time to meet staff and residents. One feature that delighted Harold was the view from a room that became available –overlooking their favorite bench in the park.

After jointly making the decision to register Barb into Cherry Hills, the couple moved furniture into the new residence and Barb’s first words were: “I love it,” which sealed the decision for Harold.

“That was magic,” Harold said when Barb expressed her approval of the move, knowing that he would not feel comfortable with the decision if his wife wasn’t in agreement. “The way I approach it is, if that was me, how would I want to be treated. It was important that we make the decision,” with an emphasis on “we.”

Adjusting to the change

Barb and Harold have made daily visits to Cherry Hills in anticipation of Barb’s Nov. 26 move-in, helping her get acclimated to the new environment.

Harold’s daughter, Polly, baked cookies and joined the couple on a recent visit. At one point, she observed Barb get up and leave the room. Harold’s instinct was to follow her.

“That’s part of being a caregiver,” he said. But Polly held him back and gently reminded him that he doesn’t need to worry because Barb was in a safe environment.

A textbook approach to an unpredictable disease

There is nothing predictable about dementia since each case takes its own path and follows its own schedule, but Alzheimer’s Association professionals praised theArnolds for their thoughtful approach, understanding that the disease is progressive and puts increasing burdens on caregivers.

“Noone wants to see their loved one progress through the stages of Alzheimer’s,” said Amelia Schafer, executive director of the Association’s Colorado Chapter. “But until we find a cure, it is unwise to deny that changes will occur. Making this decision now – before a crisis might occur – helps guarantee Barb’s safety and the quality of her care. It also enables Harold to be the best caregiver he can without working himself into exhaustion.”

“We have no secrets”

Asis their style, the Arnolds are announcing their decision (“we have no secrets”) knowing that everyone around them may not agree with the timing. The fact that Alzheimer’s is a continually progressing disease can be challenging to those who aren’t day-to-day caregivers. But the couple is pressing ahead, and will celebrate the 2018 holidays at Cherry Hills.

Harold’s busy decorating Barb’s room with photos of their six children, 11 grandchildren and six great-grandchildren, with names affixed to each. And everyone will have name tags for the holiday gathering, although in smaller groups as crowds can be a bit disconcerting for Barb.

You either laugh or you cry

The Arnolds’ journey with Alzheimer’s is already two years old. The road can be bumpy, but they continue to live their lives and enjoy every minute together. It’s roughly a two-mile walk from their home to DeKoevend Park, so Harold will continue to get his exercise as he visits Barb, and they’ll still get to spend time resting on their favorite bench.

“With Alzheimer’s, you either laugh or you cry,” said Harold.

“And I don’t like to cry,” chimed in Barb.

“We even laugh a lot,” he added, squeezing his wife’s hand.

“We can’t help that,” she added.