Making New Memories: An Alzheimer’s Caregiver and Her Journey with Her Father

Paula McClain tries not to dwell on the fact that her dad, Wiley, has Alzheimer’s disease. She realizes that he’s losing his memories of the full life he’s led for the past 87 years. She would rather focus on creating new memories, both of him and with him.

“There’s nothing we can do about it,” Paula says of the disease that led her to move her dad into an assisted living facility two years ago so he could receive around-the-clock attention. “But I’m learning a lot along the journey.”

“Hello Baby,” says Wiley as he greets his daughter on one of her regular visits. He doesn’t remember that his wife and Paula’s mother, Princess, died 15 years ago, and sometimes worries that he did something wrong to cause her to leave him. “How come I didn’t know?” he asks when she tells him that his wife passed away.

While his recent memories are short-lived, Wiley remains physically active and enjoys feeling productive. After a 30-year career in maintenance at Denver Public Schools, he enjoys straightening up after events at his retirement home.

Wiley’s congenial personality shows in his obvious delight in spending the day with his daughter. They share time together, including their ‘Hamburger Tour’ as they search for Denver’s best burger.

“I may get more out of the experiences,” said Paula.  “It’s an honor to be able to care for my dad.”

An unexpected benefit

While no one is ever going to welcome Alzheimer’s into their life, Paula has found an unexpected benefit to her dad’s disease.

“I’m seeing a new side of my dad,” she said. “When I was growing up, he was the provider and more serious. Now I’m realizing that he’s got a funny personality. As a child looking at a parent, you don’t usually get to see that. I don’t remember laughing with my dad, but I do now.”

Caregivers must decide for themselves

Perhaps the biggest challenge that caregivers face is knowing when the time is right to make a change.

“I wanted to keep dad at home as long as I could and bring services to him, but I never had the confidence to know when the time was right (to make a change),” she said. “You don’t know how you’ll respond as a caregiver. We all hope and desire different things. It’s not a judgment, but every individual has their limits.”

DSC_1413Paula was able to expand her knowledge of Alzheimer’s and get insights from other caregivers by engaging in a wide range of programs and services offered at no charge by the Alzheimer’s Association of Colorado, including support groups and classes like “Know the 10 Signs” of Alzheimer’s and “Understanding and Responding to Dementia-Related Behavior.” To learn more about classes and workshops, click here or call the Association’s 24/7 Helpline at 800-272-3900.

“Until it (Alzheimer’s) comes home, you really don’t know where to start,” she said. “No one would ever think to come to the Alzheimer’s Association before they need it, but it has been a great resource that has enabled me to be prepared for each stage (of the disease).”

Since Wiley’s diagnosis four years ago, Paula has learned that she needs to pace herself in order to be present for her dad and give him her support.

“It’s a hard disease,” she said. “I need to take it in doses. I don’t want to get overwhelmed.”

But Paula won’t, because she doesn’t want to miss any of this final trip she’ll get to take with her dad.

“I’m trying to be present,” she said. “I’m not sure what’s down the road, but I’m trying to make the most of what’s here.”

How to Better Communicate with Someone with Alzheimer’s

Ann CarterBy Ann Carter, regional director, Alzheimer’s Association of Colorado Southern Region

Communicating with a loved one in the various stages of Alzheimer’s disease or other types of dementia can be challenging and frustrating for both sides.  I can’t take credit for many of the following suggestions.  Rather this is information I have gleaned from industry experts, colleagues from the Alzheimer’s Association, and watching my own mother struggle with the caregiving of my grandmother who we realize only now had Alzheimer’s disease.  Regardless though, I hope this summary can provide some tips that might help make days a little better for those traveling this journey.

Don’t correct or try to teach

In the early stages of Alzheimer’s, people may “lose” the correct words for something and use strange words you don’t understand. The loved one knows what he or she is trying to convey and can’t understand why you don’t get it. On the other end, the caregiver may be hearing strange words or requests that seem nonsensical.

For example, one woman kept asking for a “new pert,” and became increasingly agitated that her caregiver didn’t understand her.

When you can’t understand, ask questions. Ask what a pert does or where you can find one. A series of questions about a strange word may help you decipher what the person is trying to say. And once you figure out that a “new pert” is actually a clean shirt, don’t correct or try to teach the word when that part of the language may be gone.

Communicate with care

As dementia evolves, communications can become even more challenging. The approach I see as most effective is communicating with the person from the front and at their level. Sit across from them if they are sitting and stand across from them if they are standing. Peripheral vision will decline, so facing the person straight on is important.

Other important strategies including calling the person by the name they prefer and making eye contact. Similarly, pay attention to your tone of voice. Persons with Alzheimer’s quickly pick up on your frustration, and it adds to theirs.

Take your time and don’t speak in complex sentences.  For example, if I say ‘I’m making your lunch now and I’ll be back after work to fix dinner at five o’clock,’ that’s more than they can comprehend. Just say ‘I’m making lunch.’

Choices can also be frustrating and confusing. Instead of asking whether your mom wants to wear her red sweater or the brown coat with the scarf, just get the red sweater.

When visiting someone with Alzheimer’s, always introduce yourself, even if the person is your spouse or parent.   Don’t try to make them guess or “test” their memory.

That same person may recognize you now and 10 minutes later not know who you are.  If it is apparent that you are recognized, say whatever it is you have to say immediately because the “connection” may not last.

Don’t try to reason

Another element of Alzheimer’s is that the individual may make outrageous claims; e.g., people are stealing from them, or that their spouse is having an affair. There is nothing to be gained by attempting to reason with this person.  A better approach is to apologize and validate their feelings, reassure by promising not to do whatever it is again, and then re-direct to another conversation or an activity they like.  You might be able to distract them with something as simple as a mention of the weather or an offer of a cup of tea.

“Therapeutic or compassionate fibbing” can often come in handy.   If your loved one with Alzheimer’s asks about a baby that has long since grown or keeps wanting to see a deceased spouse or parent, it’s best to just tell them the kindest thing you can think of.  Say that the person is working or they’re on vacation, and that they’ll return later.  Again, if the fib is kinder than the truth, use the fib; this is not a ‘teaching moment.’

The person with Alzheimer’s may also ask to go “home” when they already are home. The confusion arises because the person may be thinking of home, not so much as a building, but as a place where they felt safe or a time when the world made more sense. At that point, the best the caregiver can do is reassure the person that you will keep them safe and take them “home soon.”

Be kind to yourself

Caring for a loved one with Alzheimer’s can be extremely stressful, and leave the caregiver feeling very unappreciated.  Therefore, one of the most important things you can do is to be kind to yourself – giving yourself credit every day for the good work you are doing.

Here is an approach that was shared with me that some might find helpful. Each night and before you go to sleep, write down three things that upset you that day, and then toss them in the trash. Then write down three things for which you are thankful, and keep those close.

Every day is a redo.

The Alzheimer’s Association offers a broad range of programs and services for caregivers, all at no charge to the families. To learn about educational classes, click here.  To learn about support groups, click here. Or to contact the Alzheimer’s Association of Colorado’s confidential 24/7 Helpline, call 800-272-3900.

Denver Police Preparing for Skyrocketing Alzheimer’s Contacts

Police officers responding to a call of a person approaching a Walmart store with a 10-inch carving knife likely would arrive at the scene prepared for a violent confrontation. They could have similar concerns about a domestic disturbance call or reports of a driver speeding through red lights.

Imagine those same situations when the alleged perpetrator is a person with Alzheimer’s disease.

The Denver Police Department is looking at the skyrocketing diagnosis rates for Alzheimer’s – projected to jump more than 37 percent to 92,000 cases in Colorado by 2025 – and adapting its officer training programs to equip its personnel to deal more effectively with situations like these where the individual involved may not be able to respond rationally to officers’ questions.

The one-hour Alzheimer’s class is part of a comprehensive 40-hour Crisis Intervention Training (CIT)* program that the Denver Police Department (DPD) is undertaking with its 1,400 officers to help prepare them for a broader range of on-the-job challenges. The DPD has 98 percent of its officers trained in the 40-hour course. The DPD also offers an extended eight-hour class on Alzheimer’s that is optional.

“As police officers, we are seeing more and more of these situations,” said Jim Lorentz, Division Chief of the Wheat Ridge Police Department, who is providing Alzheimer’s-specific training to his Denver counterparts through the Alzheimer’s Association of Colorado.  “How do we deal with people with afflictions like Alzheimer’s?  How do we prevent confrontations?  Often, there are better and more effective ways to handle these situations.”

In his training, Lorentz shows cell phone video taken of an actual situation in Ohio involving an 85-year-old woman diagnosed with Alzheimer’s walking gingerly with a cane as she approaches a Walmart store, a 10-inch carving knife in her free hand.  Within seconds of police arriving at the scene, she is taken to the ground and left bloodied.

“How might this situation have been handled differently?” Lorentz asked the class of 40 officers in Denver’s District 1.  “We know a senior citizen is still capable of causing serious bodily injury or death, but could the officers in this situation have used critical thinking to keep the public away and safe while, perhaps, using a shopping cart as a buffer as they engaged in de-escalation techniques to allow more time to coordinate a nonviolent solution?”

Lorentz and the Alzheimer’s Association advocate the TALK approach to these situations:

  • Take it slow
  • Ask simple questions
  • Limit reality checks (for example, don’t expect the person to know what day it is)
  • Keep eye contact

The reality is that more than one in three persons over age 85 is going to be affected by some degree of dementia, and Lorentz noted that an officer responding to a situation with older seniors is likely to encounter at least one person with dementia and one caregiver.

The Risks of Alzheimer’s

Alzheimer’s poses unique challenges to both the families of those affected as well as to law enforcement.  For example, an estimated 70 percent of persons with Alzheimer’s wander, meaning that they will set out on foot or in a car or on mass transit, if it’s accessible.  The challenge is that they almost certainly do not know how to get where they are going, and will not be able to find their way back home.

“While people think they should wait 24 hours before reporting a person missing, we know that in the case of people with Alzheimer’s, if they are not found within 24 hours, there is a 50-50 chance the person will suffer a serious injury or death,” said Lorentz.

Other situations that police often encounter involving persons with Alzheimer’s include traffic violations, misdemeanor cases including shoplifting and indecent exposure (for stopping in a public place to relieve themselves), as well as cases of domestic violence.

“First of all, as police officers, we have to look at these situations critically,” said Lorentz.  “We understand that people with Alzheimer’s can act inappropriately, but we need to look at the law to determine if the offense requires a mandatory arrest, as in the case of domestic violence, or can we use critical thinking to find other options that address the specific issue and solve problems.  One of the worst places you can put a person with Alzheimer’s is jail.”

Safety Steps

As part of the training program, the officers learned about several technology tools that help locate missing persons with Alzheimer’s.  The MedicAlert® + Alzheimer’s Association Safe Return® program is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. When the MedicAlert system is activated, a community support network will be engaged, including local Alzheimer’s Association chapters and law enforcement agencies, to help reunite the person who wandered with the caregiver or a family member.

Another is Colorado Life Trak, a radio transmission system offered in a number of counties that is designed to assist law enforcement and rescue agencies in locating lost or missing persons who have been diagnosed with Alzheimer’s, autism, dementia or other disorders.  People in the program wear a transmitter, a small circular radio device on a wristband, approximately the size of a wristwatch. The transmitters and wristbands are worn 24 hours a day, 7 days a week and are difficult to remove without the appropriate tools. If the participant becomes lost or missing, emergency response services have specialized tracking equipment to help isolate the location of the transmitter the participant is wearing.

Denver Police Department’s Proactive Approach

“This Alzheimer’s training component is one part of our larger CIT program to give our officers the tools to be effective in their roles while better understanding the challenges our citizens may be facing,” said Denver Police CIT Training Coordinator Susan Gann.  “As society and our population change, we need to adapt so that we can live up to our motto of serving and protecting the people.  This CIT program is part of our effort to stay one step ahead.”

Training Paying Dividends

Denver police officers already have seen benefits from the training.  Gann cited several examples of how officers have been able to utilize the training:

  • Police officers were called to meet with an elderly woman who reported that her car, which had been involved in several accidents, had been stolen.  After talking with the woman and detecting signs they interpreted as memory lapses, they referred her case to the department’s crisis intervention response team officer.  While the woman, who lived alone, reported feeling well and said she was well-fed, the investigating officer discovered that she had no food in the house, had lost significant weight from lack of eating, and was dehydrated.  The officer was able to refer her to the department’s Adult Protective Services team for assistance.
  • An elderly woman was reported missing by her family after they conducted a search for her.  The responding officer recalled from the training that a person with Alzheimer’s may choose to hide from family members, whether out of fear or thinking of it as a game.  The officer found the woman hiding in a closet, avoiding a lengthy search in the community.
  • An elderly woman was found on I-25 near the Wyoming border, having driven her car – with a flat tire – until it ran out of gas.  Based on her responses to inquiries from Colorado State Patrol, they determined that she was suffering from memory lapses and had her transported back to Denver where Denver police engaged her with the Adult Protective Services team.  And several off-duty Denver officers who lived in her neighborhood drove up to repair and retrieve her car.

“The key,” said Lorentz, “is to recognize the situation and take action on it.  Many times, what might be a relatively minor situation can turn into a life-threatening situation if the officer does not take the time to analyze it.  We need officers to think critically and ask ‘how can we solve this problem.’  We believe this training will help them make those decisions.”

Others Adopting the CIT Training

The Denver Police Department is not alone in seeing the value of CIT training. Police departments throughout Jefferson County have partnered with the Alzheimer’s Association since the early 2000s. The county has taken the program a step further, adding several clinicians who can be called to the scene of a police call, follow up with the families, arrange contacts with the Alzheimer’s Association as appropriate, and provide support and resources to the family.

“It’s tough to take a snapshot of a crisis situation and know what is the right thing to do,” said Emily Richardson, CIT coordinator at the Jefferson Center for Mental Health. “First responders are not trained mental health professionals. We don’t want them to be diagnosticians. It’s kind of a balancing act to determine if a situation is a criminal matter or a mental health matter.”

One police officer who took CIT training told Theresa Grill, professional education coordinator for the Alzheimer’s Association of Colorado, “I wish we’d had this training earlier. We recently responded to a call that we would have handled completely differently if we better understood what we were facing.”

Families Play a Role as Well

“Families and caregivers also play an important role in ensuring the safety of their loved one with Alzheimer’s and the responding law enforcement professional,” noted Grill.

“Anyone calling for emergency services involving a person with Alzheimer’s or another dementia should always state to the dispatcher that the individual involved is someone with a progressive dementia,” she said. “They should also request medical transport, and provide those same directions to the responding officer. This can help first responders better interpret the behaviors they will see upon arrival.”

The Alzheimer’s Association of Colorado offers a free, interactive online class for first responders that was developed with input from first responders. To learn more, click here or contact Theresa Grill at 303-813-1669.

* Crisis Intervention Team (CIT) is an innovative first-responder model of police-based crisis intervention with community, health care, consumer and advocacy partnerships, like the Alzheimer’s Association. CIT provides law enforcement-based crisis intervention training for assisting those individuals with a mental illness, and improves the safety of patrol officers, consumers, family members and citizens within the community. CIT is a program that provides the foundation necessary to promote community and statewide solutions to assist individuals with a mental illness. The CIT Model reduces both stigma and the need for further involvement with the criminal justice system. CIT provides a forum for effective problem solving regarding the interaction between the criminal justice and mental health care system and creates the context for sustainable change.

Advocates Meet with Colorado Congressmen to Press Alzheimer’s Agenda

See more photos of the event>>>


April 7, 2017 – A record 1,300 Alzheimer’s advocates from around the country, including 13 representing Colorado, met last week with members of Congress in Washington, D.C., to impress upon them the importance of increased funding for a cure for Alzheimer’s as well as support for palliative and hospice care.

As they have for more than a decade, the Colorado advocates met with all nine members of the state’s congressional delegation to reinforce the message that Alzheimer’s medical research is a bipartisan issue, and they must support adequate funding for the National Institutes of Health (NIH) to advance Alzheimer’s research. This is more critical than ever in light of ongoing budget discussions in Washington, D.C., that include potential cuts in NIH funding.

“The bipartisan support for Alzheimer’s research is there, and the economic argument for the need to find a cure is crystal clear,” said Gene Sobczak, executive director of the Alzheimer’s Association of Colorado. “What we need now is the resolve to make the necessary funding available so that scientists and researchers can accelerate their work to find a cure.”

U.S. Government-funded Alzheimer’s research currently stands at $991 million per year. NIH scientists have projected that a minimum of $2 billion per year is needed for Alzheimer’s research to achieve breakthroughs in developing preventions and effective treatments by 2025. Our advocates requested that Congress increase funding by $414 million this year. Scientists and researchers at NIH already have a plan for how they can spend these funds, which will move us closer to our goal of a world without Alzheimer’s.

At the same time, the cost for caring for the 5.5 million Americans with Alzheimer’s and other dementias is expected to top $259 billion in 2017. Medicare and Medicaid alone spent $160 billion caring for people with Alzheimer’s and other dementias in 2016.

Palliative and hospice care

The second major “ask” of the delegates was support for the Palliative Care and Hospice Education and Training Act (PCHETA), which would increase the availability and quality of hospice and palliative care for persons in the later stages of dementia. Studies have shown that individuals with advanced dementia enrolled in hospice have better symptom management, lower rates of hospitalization and lower death rates when they are hospitalized.

And those nursing home residents with dementia who receive palliative care at the end of life are significantly less likely to require hospitalization, visit an emergency room or die in a hospital.

“There is currently a shortage of health care professionals trained to provide palliative and hospice care services, and the need for these services is growing as the baby boomers age,” said Coral Cosway, director of Public Policy and Advocacy for the Alzheimer’s Association of Colorado.

The importance of advocacy

The 1,300 Alzheimer’s advocates – the largest group we have brought to the Hill for a one-day advocacy initiative – received training on the advocacy process, including how to make an effective “ask” of their member of Congress. They also received an overview on the current political environment.

In addition to the in-person visits, other Colorado advocates sent supportive messages to each member of the Colorado’s congressional delegation in the week prior to the Forum to reinforce the importance of the upcoming visits.

“The Alzheimer’s Association utilizes the skills and talents of countless volunteers to help individuals and families affected by the disease,” said Cosway, “but our legislative volunteers have the unique opportunity to help all 5.5 million Americans with Alzheimer’s at once by advancing legislation that supports research and improves care.”

Each spring, the Alzheimer’s Association of Colorado meets with legislators in Colorado and Washington, D.C., to carry the Association’s message. Individuals who have an interest in engaging in this process, which helps generate support to change federal and state laws impacting the Alzheimer’s community, please sign up here to receive updates and opportunities to join this effort.


Volunteers Make the Alzheimer’s Association Run – And They Stay for Years

If you’re going to volunteer your time to a community organization, you want to know that your contribution will be meaningful and appreciated. And you’ll want to emerge from the process with a sense of personal satisfaction and accomplishment.

That is certainly the case at the Alzheimer’s Association of Colorado, where more than 91 percent of volunteers surveyed across the state rated their experience as “very satisfied” or “satisfied,” with the average tenure of volunteers being 5.5 years.

Staffed by an army of over 900 volunteers supporting only 50 full-time employees, the Colorado Chapter of the Alzheimer’s Association relies heavily on volunteers who enable the organization to provide a full range of educational programs and services at no charge to individuals living with dementia and their families. In fact, those volunteers contributed more than 17,400 hours of their time last year, which equated to a 20 percent increase in the association’s staffing.

“Our volunteers give us an invaluable boost with their talents, their passion and their energy,” said Gene Sobczak, executive director of the Colorado Chapter. “Without their contributions, we could not provide the level of services that we do today.”

Volunteers serving 15 years and more

The survey respondents covered a wide spectrum of age and experience levels. More than 9 percent of respondents are between 18 and 24 years of age while nearly 26 percent are over 65, with the balance spread between. About 40 percent of those surveyed have been involved as an Alzheimer’s Association volunteer for 2 to 3 years, but more than 11 percent have been committed to the Alzheimer’s cause for 15 years or more.

“There is a great satisfaction in what I do,” said Linda Kuhns, who volunteers four days per week on the Association’s 24/7 Helpline and has worked with the organization for nearly four years.  “Even if I can’t always solve the callers’ problems, I may be able to help them cope.”Linda Kuhns

Kuhns, who is retired from a career in the restaurant business, noted that she values both the Alzheimer’s cause as well as the work environment.

“The quality of the staff is critical,” she said. “Everyone is service-focused and solution-oriented. They are here for the right reasons. They walk the talk.”

Many of the volunteers, like Kuhns, are engaged in more than one activity at the Alzheimer’s Association. In fact, 42 percent are involved in two or more areas. Kuhns, for example, volunteers on the Colorado Chapter’s Denver Walk to End Alzheimer’s, the Memories in the Making Art Auction and represents the chapter at area health fairs in addition to her work on the Helpline.

Specific volunteer skills needed

The Colorado Chapter, which provides services to 69,000 Coloradans living with the disease as well as nearly a quarter of a million caregivers, utilizes volunteers in a multitude of areas. The association is actively seeking volunteers in several specific areas including:

  • Helpline Counselor – The Helpline is one of the most heavily utilized services offered by the Alzheimer’s Association. Volunteers are trained (15-20 hours) to provide resource information and caregiver support in four-hours shifts between 9 a.m. and 4:30 p.m. The role requires good telephone etiquette, basic empathic listening and affirmation techniques, and the ability to look up information on a computer and enter information into an online database. Bilingual skills are welcome.
  • Support Group Facilitator – The primary duty of the volunteer is to guide a meeting for persons who are caring for someone with Alzheimer’s or a related dementia. Groups meet once per month at a set day and time. Facilitators for the Early Stage Program work with persons in the early stages of Alzheimer’s along with their care partners. Knowledge of the disease and caregiving issues (personal and professional) is required. Two hours of training is provided.
  • Memories in the Making Facilitator – Work with a trained care center staff person to plan and facilitate a weekly art group for individuals diagnosed with dementia. Some art background and understanding of Alzheimer’s or dementia is preferred. Groups meet once a week and the commitment is usually about two hours per week. One-day training is offered several times per year.
  • Public Policy Advocate – Interested in the legislative process? Have time to follow legislation in Denver or Washington, D.C.? Interested in letter writing or making phone calls to develop support for specific legislation? Full-day training is provided in the Denver office.
  • Health Fair Ambassador – Represent the Alzheimer’s Association at community health fairs and other community events and answer basic questions about the Association’s services.
  • Diversity & Inclusion Outreach – The Alzheimer’s Association offers culturally appropriate support for Latinos, African Americans and the LGBT community. Programs and services are all available in Spanish and address the unique needs of a broad range of diverse communities.
  • Early Stage (Alzheimer’s) Activities – Assist with music programs, croquet in the park and other social activities for individuals with early stage Alzheimer’s and their care partners.
  • Special Events Support – Help is needed in event-day tasks, team recruitment and developing corporate sponsorships for our annual events, including the Walk to End Alzheimer’s, Memories in the Making Art Auction, Young Professionals (YPAAC) events and annual education symposium.
  • Speakers Bureau – Represent the Alzheimer’s Association and make presentations to community groups. Speaking engagements are offered at a range of times and locations to suit individuals’ schedules.
  • General Office Work – Computer data entry, information research, telephoning (thanking donors and event volunteers) and general office work are among the support that volunteers provide.

To learn more about volunteer opportunities at the Alzheimer’s Association, click here or call Deb Wells, volunteer and statistics coordinator, at 303-813-1669.

Extra Support Helps Caregiver Be There for Her Mother

Annette Rucker isn’t shy about admitting her trepidation about coping with the Alzheimer’s diagnosis her mother, Alma, received 15 years ago.

“I knew I was not going to be able to handle this very well,” said the IT professional. “I’m going to need support. I need it for me.”

Annette had seen the decline in her mother’s cognition over the years, but didn’t fully appreciate the gravity of the situation. Her mother would continually repeat questions, and the situation got worse over time.

“We finally said: ‘this isn’t funny anymore,’ and had doctors perform tests that showed she had Alzheimer’s,” Annette said.

A Different Mom

After 15 years, the ravages of Alzheimer’s are undeniable. Alma is wheelchair-bound and doesn’t communicate in a way most people would comprehend.

“She’s still my mom, but she’s a different mom,” Annette reflected. “It’s still hard for me to wrap my mind around this disease where you go from thriving to all the way in the opposite direction.”

“Miss Alma,” as Annette lovingly calls her mother, isn’t the only one who’s changed. Her daughters have each adjusted as the disease has progressed. Annette’s sisters each take their own approach to their mother’s Alzheimer’s. One spends time with Alma every evening. The other can’t bear the thought of seeing her mother essentially incapacitated.

For Annette, as difficult as it is to see the changes in her mother over the years, there is no choice to be made.

“One day, she just quit walking. Then she stopped feeding herself,” said Annette. “But she’s my mom. I have to see her.”

Mother and daughter have settled into a routine based around mealtime, which Annette finds is the most rewarding because it’s a bonding moment. “She doesn’t talk anymore and doesn’t know me, but she’s still alive and I get to see her. I get to connect with her by feeding her. It’s really more for me.”DSC_1477

Sharing her experiences

While the past 15 years as a caregiver for a person with Alzheimer’s has had its share of challenges, Annette has chosen to share the wisdom she’s gained. She serves as a volunteer for the Colorado Chapter of the Alzheimer’s Association at health fairs, the annual Denver Black Arts Festival and, of course, at the annual Walk to End Alzheimer’s, which has become a “must do” event for her.

And she continues to expand her knowledge base with the variety of educational programs offered through the Colorado Chapter. Since her introduction to the Association more than 10 years ago through a free, introductory program at the senior housing where her mother was living, Annette has participated in support groups and other programs ever since.

“They (the Colorado Chapter) have resources you’d never know about on your own,” Annette said. “I learned about resources for those who want to keep their parents at home, memory care facilities and more. You need information to decide what works best for you and your family.”

But it was the caregiver support groups that resonated the most with Annette. That’s where she was able to connect with people in the same situation as her – and some who had already lived through extremely challenging times.

“People in support groups get it,” she said. “You really don’t have a clue (about the effects of Alzheimer’s) unless you’re going through it with someone. We can sit and laugh – and cry – about things. They understand.”

Annette’s advice isn’t surprising: find a support group, and take advantage of resources offered through your church.

“You may think you do, but you don’t really know what you’re getting into (with Alzheimer’s),” said Annette. “For the longest time, it was difficult for me to cope. People at work could tell by my face that I had been to see my mom. Now, I’m at the point where I can leave her after a visit and still be a happy person. Now, I’m just glad she’s still alive. There’s no cure, but they’re working on it. And I get to see my mom.”

Alzheimer’s Caregiver Turns Nervous Energy into Loving Gift

Nancy Rose has a lot of nervous energy. She also loves to sew, and has a house filled with fabric she’d collected for an as-yet-to-be-discovered good purpose. All she needed was inspiration.

Nancy’s mother has Alzheimer’s disease, and in her search for something that might bring her mom some comfort, Nancy came across sensory quilts, unique handcrafted items that are designed to provide tactile stimulation for people with dementia who are experiencing their world through their senses.

That was the spark Nancy needed. Now, one year and more than 120 quilts later, Nancy isn’t slowing down. Each quilt, lovingly handmade as if it were for Nancy’s own mother, is donated to families and assisted living facilities throughout the Front Range.

“It doesn’t feel right to charge for them,” Nancy said. “People with Alzheimer’s and their caregivers have enough to deal with.”

Never mind that you will find sensory quilts selling online for $50. You’ll see them for $70. Even as high as $130. Money’s not the endgame for this motivated volunteer.

“If people use the quilts, even if only for an afternoon, it’s worth it,” she said.

The quilts include elements that can be manipulated by the person and alleviate boredom, channel energy, and allow for success as the person engages with the various parts of the quilt. But for some recipients, they’re more than that. One recipient hung his quilt on the wall so that he could look at it every day.dsc_1434

Nancy Rose’s quilts formed the centerpieces at 70 tables at the Alzheimer’s Association of Colorado’s recent Reason to Hope fundraising luncheon that drew nearly 700 people to learn more about the disease that affects 67,000 Coloradans and nearly a quarter of a million caregivers. Each quilt was donated to a local family or assisted living facility so it could be enjoyed by a person with dementia.

“Nancy Rose is an amazing volunteer,” said Michelle Nelson, development manager for the Alzheimer’s Association of Colorado and coordinator of the Reason to Hope event. “As a person who is living with the disease in her own family, she is committed to learning as much as she can about it while volunteering her own time and resources to make a difference.”

To learn more about volunteer opportunities with the Alzheimer’s Association of Colorado, click here or call Deb Wells at 303-813-1669.

The Good, The Bad & The Ugly of Alzheimer’s – and The Need for More Rapid Referrals

When you think of progress being made on the front of referring Coloradans for education, care and treatment for Alzheimer’s disease and other forms of dementia, you might be reminded of the Clint Eastwood classic, “The Good, the Bad and the Ugly.”

The good news is that the Alzheimer’s Association is actively and aggressively working on behalf of families affected by dementia, providing education and programs – all at no charge to the families – and funding research to find a cure for the disease.

The bad news is that there still is no prevention for Alzheimer’s. No effective treatment. No cure. And the trend line for the disease is alarming: rising 37 percent between now and 2025 to more than 92,000 people living with Alzheimer’s – far more people than seats in the Denver Broncos’ Mile High Stadium.

The ugly news is half of all people with Alzheimer’s and other forms of dementia are never diagnosed. And of those who are, too many are never told they have Alzheimer’s and are never referred to our Association by their physician for the care and support that would make their journey easier to manage.

Why is a diagnosis important? Without it, the individual and his or her family may never understand the cause behind the person’s changing behavior…their declining memory…their inability to complete simple tasks that once were taken for granted.

Without a diagnosis, the person will never get the chance to enroll in important medical trials being conducted across the country to find that elusive cure, and to have the opportunity to try new drugs that are in the experimental stages.

Without a diagnosis, caregivers may never learn of valuable services, such as support groups, programs for persons in early, middle and late stages of the disease; as well as classes that teach skills for better communication with a person with dementia, in addition to legal and financial planning workshops.

is6116So, why are many of those with Alzheimer’s diagnosed but never told? Why aren’t more providers taking advantage of the Rapid Referral program that directs individuals to the Alzheimer’s Association for education on the disease and options that are available?

“Alzheimer’s is a difficult subject matter to address with any individual who is facing that diagnosis,” said Kay Adams, social worker and clinician at the Kaiser Permanente Memory Clinic. “It’s not a short discussion. A primary care physician may not have the time or expertise to talk about it in a supportive way. And if the diagnosis is merely memory loss or cognitive disorder, it isn’t enough to trigger support services. We can’t refer a person to the Alzheimer’s Association for education and support without a proper diagnosis.”

Both Kaiser Permanente and the University of Colorado Hospital’s Outpatient Seniors Clinic are among the medical groups that have been leaders in advocating for greater use of Rapid Referral to get their patients into services provided by the Alzheimer’s Association. It’s a good place to start.

“Our relationship with the Alzheimer’s Association is unique in that once the patient and family agree, the Association reaches out to them and not the other way around,” said Elvin (Tedd) Perry, RN and coordinator for the University of Colorado Seniors Clinic’s Dementia Program. “It is a great introduction to, or continuation of, managing our patients’ care. The point is to support our patients.”

The progress being made by Kaiser Permanente, University of Colorado Seniors Clinic and other medical groups across the state is encouraging as we look to serve all individuals and families dealing with Alzheimer’s and other forms of dementia. Now, our goal is to encourage every provider to see the benefits of making a Rapid Referral and give those people the benefit of the programs and services available to them – all at no charge – that can make such an important difference in their lives.

If you have a question about Alzheimer’s Association services, call the 24/7 Helpline at 800-272-3900. If you are a health care professional, call Theresa Grill, Alzheimer’s Association of Colorado professional education coordinator, at (303) 813-1669, to get the Rapid Referral program in your health system.

Protecting Dad: Watching out for the Caregiver as Mom Deals with Dementia

Sirena Rodriguez has watched her mom, Mary Martinez, change over the past six-plus years under the weight of Pick’s disease, a form of dementia that causes personality and emotional changes as well as aphasia, which is a loss of the ability to understand or express speech.

While Sirena knows there is no remedy for her mom, she is equally focused on her 81-year-old dad, Paul, who is struggling under the weight of his responsibility as caregiver.

“It’s tough for my dad,” said Sirena. “He didn’t want to send her (Mary) away to a care facility. His three daughters pushed him when we saw that he couldn’t help mom the way she needed.

Sirena sees the irony in her parents’ situation. Her dad remains very sharp intellectually, but the toll of caregiving has left him in fragile physical health. In contrast, her 79-year-old mom is doing very well physically but can no longer communicate with family. In fact, she no longer recognizes her husband or daughters, and is unable to express her own needs or sensation of pain.sirena-rodriguez

“My dad is very lonely without mom,” said Sirena. “He misses her companionship and feels guilty for not continuing to care for her at home, but now that she’s in a care facility, at least he doesn’t have the day-to-day stress.”

The family’s experience with dementia is not limited to one individual. Mother Mary’s sister, Sally, is living with Alzheimer’s, although her communication skills remain strong.

“My mom can only communicate through facial expression,” said Sirena, “She doesn’t recognize emotion, but she always enjoyed fashion and she still checks out my outfits.”

The experiences Sirena and her sisters have had in caring for both of their parents have led them to become active participants in the Alzheimer’s Association of Colorado’s annual Walk to End Alzheimer’s, which raises funds to support programs and services offered at no charge to the public, as well as research for a cure.

She also has participated in a support group through the Association, and hopes to repeat the process with her entire family. And the sisters have learned several valuable lessons that they hope other families can learn from as they deal with dementia in a loved one:

  • Become knowledgeable about healthcare options for loved ones. Sirena’s family benefited from respite care in her parents’ home.
  • Explore financial and legal planning to ensure that family members are not caught by surprise in the challenges of arranging care and legal transitions.
    • Click here to learn about care options as well as financial/legal planning at the Alzheimer’s Association’s Community Resource Finder.
  • Become familiar with Medicare and what it will and will not cover, since the cost of long-term care can be quite high.
  • Explore support groups. To learn more about Alzheimer’s Association of Colorado support groups, click here. Also, call the Association’s 24/7 Helpline at 800-272-3900 with any questions about resources for caregivers Alzheimer’s disease or dementia.

How to Get the Most Out of a Support Group

By Deb Wells, Volunteer and Statistics Coordinator, Alzheimer’s Association of Colorado

To learn more about support groups offered through the Alzheimer’s Association of Colorado, click here, email Heather Kanapackis at or call 303-813-1669.

Okay, I admit it. I was a support group junkie! When your loved one, at age 58, is diagnosed with a mysterious (to us) terminal, dementing illness, more information is better – and offers a bit of an emotional outlet. I attended three main support groups. Each had a different impact on me and my husband, as well as how we moved through the “journey” of Lewy Body Dementia.

Our first encounter with a support group came about six weeks after his diagnosis. I was desperate to find a place where John could connect with someone else going through the same thing. He was a different kind of male – quite unguarded, inclined to share his feelings, and open to learning from others. He so needed to talk with someone else who was in his situation. I reached out to the Alzheimer’s Association and learned there was a support group that met just a mile or so from us. I contacted the name on the listing and explained that I wanted my husband to meet others who were recently diagnosed. She arranged to have one of the other caregivers in the group bring her husband so John could chat with him.* We arrived and all was going as expected. Prior to the official start of the meeting John and his new compadre compared notes and had a nice chat.  (*There are currently Alzheimer’s Association Early Stage support groups and social engagement activities that address the connection I was striving for with John.)

A Unique, But Scary Meeting

care-and-supportThen the meeting began with each person describing their current status: anything new, any questions or concerns. Other group members chimed in with their thoughts on situations or issues. Another new group member began by describing his wife’s illness. She had had a stroke, which was followed by a decline in cognitive abilities, along with new paranoia and violent tendencies. She was awake all night, suffering from delusions and acting out in new and surprising ways. He described a situation where he awoke and she wasn’t in bed. He went from room to room searching for her to no avail. As he moved into the bathroom, she leaped from behind the slightly closed door with a butcher knife in her hand, poised to attack him! He was able to get the weapon from her and calm her down, but not without great effort.

John and I both were affected by this story! I had no idea that dementia could manifest in this type of behavior, and John internalized the details so much that he talked about it for months afterward. He apologized repeatedly for anything he might do in the course of the disease. After learning more about symptoms and behaviors, I reassured him that this was a very rare situation, and that he might never display anything close to this type of behavior. As it turned out, in John’s 12 years of dealing with his illness, his behavior was just the opposite. He was kind, cooperative, collaborative and very appreciative of my care. Perhaps this incident imprinted on him in some way.

So, what did I learn from this episode? After attending more groups with this facilitator, it was clear that what we heard in that first meeting was an anomaly. In fact, I was associated with that group for 14 years (eventually as co-facilitator) and never heard another situation quite like that one. That extreme description of behavior could have put me off from ever attending another support group. Fortunately, the next day the facilitator called me to chat about the meeting, and assured me this was not the norm. Thankfully, I kept attending and learned more than I could have ever expected. Everyone’s situation was unique. I took the approach that I could learn something from every story. Some folks talked about caregiving needs and asked about resources that I could also immediately put into place. Others talked about their loved ones being placed in a care community (“would we ever need to do that?”). It was as if I was in an “Alzheimer’s 101” course and an advanced graduate seminar at the same time. Apply what is needed today and tuck away the nuggets of experience you’ll need for later on, I decided.

Early Onset Caregivers

A few years later a new type of group was introduced at the Alzheimer’s Association: Early Onset couples were screened and invited to begin attending a monthly meeting in the evening at the Association offices. The large group of caregivers and people with the diagnosis would initially meet in one group and go through introductions and receive updates on classes, events, etc. Then the caregivers and those diagnosed would separate to adjacent rooms for their support group meetings.**

(**This format has now been replaced by more targeted Early Stage support groups, followed by structured social engagement opportunities.)

Often we would hear peals of laughter coming from the next room – and sometimes from ours, as well! Groups help “normalize” those situations that we think are totally unique. I found great comfort in knowing that I’d have a bunch of eager listeners to my latest tale of absurdity, as did my peers.

John also got a great deal out of the group. He formed friendships with some of the others with a diagnosis. Most of the time the caregiver group was comprised mostly of women, probably due to their desire to reach out for resources for care, and a tendency toward “joining.”

I learned that we all needed to be attentive to everyone in the group. This format, unlike my first experience, was free-form. Participants shared randomly, rather than going person to person. As we neared the end of one of our meetings, the quietest person in the group that evening erupted in tears and was visibly distraught. We then decided that we should begin the meeting by asking if anyone had an urgent situation that needed to be discussed immediately.

Of course, over time people came and went. But there was a core group who bonded and formed great friendships. Some traveled together – so convenient to have a male caregiver with another caregiver’s husband who had the disease in situations like restroom visits, and likewise with the women. Many were at the ready if someone needed a substitute caregiver due to an appointment or after surgery. In my hubby’s final days in a residential assisted living home, five or six of my group members stopped by to be with me at such a tough time.

Lewy Body Support Group

The third group we attended was a Lewy Body Dementia support group. The Mayo Clinic confirmed my thoughts that John probably had this type of dementia, which has unique symptoms that really hit the mark for John. A new group was being formed in northern Colorado, and we were one of the first couples to join.

Caregivers and people diagnosed with Lewy Body Dementia were both included. Initially, it was planned that we would meet in separate rooms, but as the meetings progressed it seemed that everyone was comfortable with caregivers and those with a diagnosis meeting together. That didn’t stymie the conversation a bit. Over the years we talked about everything and anything – death, autopsies, driving, relationships…

A great deal of respect was shown among the participants, many of whom were early onset. We learned many new aspects of John’s probable future situation, including physical limitations from Parkinsonian symptoms.

As time went on, and complicated by a steep cognitive decline following surgery (although all precautions were made to avoid sedating substances), John ended up in a wheelchair. I left my career and spent many hours a day at the rehab facility. In fact, his decline was so severe, he was on hospice for a short time. Eventually, we turned things around and he looked forward to getting out to the support groups.

So, my key learnings about support groups are:

  • If you attend one and don’t like it, try again. Try the same group the next month, or try another group.
  • You’ll be asked to share to your comfort level. You won’t need to “be prepared.” This meeting is for you.
  • Feel free to ask direct questions — if you need information, this is an opportunity to get the benefit of others’ experiences and resource ideas.
  • If possible, include the person you’re caring for. It was one of the positive things in dealing with this disease for my loved one.
  • It’s OK to laugh! You’ll find your unusual story will prompt the sharing of others, and this makes everyone more comfortable.

To learn more about support groups offered through the Alzheimer’s Association of Colorado, click here, email Heather Kanapackis at or call 303-813-1669.