At our last Without Warning meeting, Bob, whose wife passed away from younger-onset Alzheimer’s disease several years ago, told me something interesting. He realized that during the 10 years he has been attending Without Warning meetings, he has learned how to share his story. While sharing your story might seem like a small task, I’ve grown to realize that it is a profound and healing skill.
Without Warning, a 13-year-old support program of the Rush Alzheimer’s Disease Center, is for families living with younger-onset Alzheimer’s disease. Younger-onset Alzheimer’s means the person is diagnosed by the age of 65 or younger. This is a young age to be experiencing Alzheimer’s disease. Group members might still be working, raising children, driving and have friends who aren’t experiencing such a life-changing disease. Alzheimer’s at any age can make someone feel isolated and different, but these feelings only intensify when someone is young.
‘Agony of an untold story’
The author and poet, Maya Angelo once said, “There is no greater agony than bearing an untold story inside you.” As a group facilitator, I have seen the agony of an untold story in both the person with Alzheimer’s and their family members, and there are numerous reasons their stories are not heard or told.
The passing of the actor Gene Wilder — remembered by many for his lovable portrayal of Willy Wonka — further reinforced that fact that Alzheimer’s disease does not spare anyone. Many people were no doubt surprised to hear about his diagnosis and that he died from complications of Alzheimer’s disease. After all, Gene Wilder was wildly talented, engaged in creative activities all of his life, appeared physically spry and had a wonderful imagination. How could this happen to him?
Indeed, Alzheimer’s disease dementia can happen to anyone, and crosses race/ethnicity and social economic status. More than 5.5 million people in the United States officially have Alzheimer’s disease dementia, which is an underestimation, as many people live with the disease never receive a diagnosis.
Minorities, African-Americans and Latinos are appearing to be hit harder with Alzheimer’s disease and dementia. African-Americans are at least 1.5 times more likely to develop the disease, and the data suggests the same for Latinos. Recent data is also confirming that sex and gender differences are present in Alzheimer’s disease — women are developing the disease more than men.
Lifestyle factors that may increase Alzheimer’s risk
Comorbid medical conditions such as heart disease, diabetes, nutritional deficiencies and depression all can lead to poor cognitive function and can be risk factors of Alzheimer’s disease. People with a history of hypertension also may have a greater risk for Alzheimer’s disease dementia and other dementias. In addition, people who have decreased heart function are two to three times more likely to develop significant memory loss compared to those with better heart function. Lastly, those with multiple cardiovascular risk factors were more likely to have impairment in learning, memory and verbal fluency tests and worsened over time.
Is your current living situation still working, or is it time to make a move? While you may want to avoid it, it’s a conversation that — at some point — you should have with yourself, your family and your doctor. Melissa Frey, LCSW, a social worker at Rush who has helped many individuals and families work through this decision-making process, offers her thoughts on what you should consider regarding living arrangements as you age.
“Nothing is more empowering than having your own plan, and it’s never too early to have ‘what if’ conversations,” Frey says. So ask yourself how and where you’d want to live if you needed extra help.
If you are like most Americans and want to stay in your home, do you have the financial resources to remain there and afford in-home care and any necessary home modifications (e.g., ramps for wheelchairs, railings in the bathroom)? What are your thoughts about assisted-living or senior communities? Is living with a relative an option? If yes, which relative? And are they open to having you live with them? Be honest with yourself when it comes to family dynamics; while we may love our children, we may not always live well with them.
Begin your research by evaluating your finances and insurance coverage, talk to your family about their feelings and financial capabilities, and visit assisted-living and senior facilities. Try an unscheduled visit, which might give you even better insights into the environment.
How’s It Working for You?
While you may envision making a change down the line, you might not see yourself as needing help right now. Others in your life, however, may think that it’s time you make a move, and that could be a source of conflict.
A good, objective way to determine what’s best for you: Perform an assessment to see if your current situation meets your health and safety needs. If you need help doing this, reach out to a social worker or your doctor. Questions to ask include the following:
Am I able to prepare my own meals and eat nutritious, regular meals?
Can I use the bathroom without assistance?
Can I dress myself?
Am taking my medications as prescribed?
Am I paying my bills in a timely manner?
Am I safe (e.g., am I turning off the stove and the electric space heater after each use, blowing out candles, not in danger of falling, etc.)?
If you answer “yes” to all the questions, you’re doing well and probably don’t need to make any changes. But if you answer “no” to any of them, it might be a good time to talk to a social worker or your doctor and review your options. If falls are a concern, perhaps home modifications can help. If meals, dressing or bill paying are problems, maybe someone (whether it be a home health professional, a neighbor, or a son or daughter) can come over once or twice a day to help out. If the problem is more complex and your safety is at risk, a social worker or doctor, or both, can work with you and your family to explore options and find solutions.
In recognition of National AmeriCorps Week, AmeriCorps member Simone Blake explains her work with the Rush Alzheimer’s Disease Center.
I’m serving as a healthy nutrition and aging educator at the Rush Alzheimer’s Disease Center through AmeriCorps’ Healthy Communities Corps. Its mission is to improve food quantity and quality in underserved communities across Chicago and Cook County.
The AmeriCorps program engages over 80,000 men and women in intensive service to tackle pressing problems each year, through thousands of nonprofits, schools, public agencies and community and faith-based groups across the country.
Everyone should have opportunities to reach positive health outcomes. Aging adults in our current fast food nation find themselves stranded. They need fiber and nutrient-dense foods when only high-calorie, low-nutrient foods are available.
Many patients leave a lasting impression on me, but there are two patients in particular who really inspire me. It’s a husband and wife: He’s 91 years old, and she’s 89.
Even though they’re at an age when a lot of people are unable to live independently, they’re still living at home. They basically take care of themselves. They’re still mentally sound, and even though they need walkers, they’re able to get out and get around. They go grocery shopping together. She still cooks dinner every night, and he does the dishes.
It’s something you don’t see very often. Thanks to modern medicine, people are living longer, but a great many of my older patients are in nursing homes or are dependent on their children because their age or illnesses have left them unable to fully care for themselves.
Rebecca Nappi in the chaplains’ on-call room at Rush (Tony Wadden photo)
By Rebecca Nappi
From September to December, I took a sabbatical from my real life as a journalist at The Spokesman-Review in Spokane, Wash., and I moved to Chicago and completed a 12-week internship in chaplaincy at Rush University Medical Center. Aging experts predict that some baby boomers, like me, who are now in their 50s will work at “encore careers” in their 60s and 70s, lured there by financial necessity and/or unfulfilled callings.
In the mid-1990s, I first heard a subtle call to chaplaincy. My brother-in-law and father died within two years of one another, and family members gathered for weeklong vigils at their death beds. It was sacred time, and in an editorial board meeting at the newspaper 17 years ago, I blurted out: “I’m going to be a hospital chaplain someday.” I finished the theology master’s degree required for it in 2003, and this fall completed one of four required “units” of clinical pastoral education, which combine class work and practical experience. I’ll complete the other units in the future. Unlike most professions, age is a plus in chaplaincy work.
The second week at Rush, a cab driver, noting my chaplain ID, inquired about the program. I explained the requirements. He seemed surprised. “Why does it take so much education and training just to be a chaplain?”
Every month for many years, I have had the wonderful opportunity to listen to an amazing group of people. Their knowledge and insights have taught me about living while facing some of life’s most difficult challenges.
Sponsored by the Rush Alzheimer’s Disease Center, this monthly group is for people living with younger onset Alzheimer’s disease (diagnosed under the age of 65). Our group, called Without Warning, is for both the person experiencing memory problems and the family members or friends who are also on this journey. We meet to talk about how to live gracefully with Alzheimer’s. We talk about the difficulties, but also the triumphs. I’m one of the several staff people who help coordinate this growing and vital program.
As you can imagine, having Alzheimer’s disease at such a young age is often unexpected and can be an overwhelming experience. These individuals describe Alzheimer’s as feeling like they have fallen into a pit and can’t find the way out. They talk about feeling disconnected from people who are right around them. They talk about a tired feeling they have never felt before. And, they talk about realizing that they are not the same spouse, parent, child or friend. Continue reading →
For over four years now, Older Adult Programs at Rush has offered “Take Charge of Your Health,” an educational workshop for adults and older adults living with ongoing, chronic health conditions, such as diabetes, heart disease, asthma and high blood pressure.
During six weekly interactive sessions with trained facilitators, participants come together with others going through similar experiences to learn skills and information aimed at helping them become more confident and in control of managing their health conditions and overall health as a whole. Every so often, we have a participant who shows such enthusiasm for the program and comfort with the material that we ask her/him to go on to become a trained workshop facilitator.
Several years ago, we had the great fortune to meet such a person, Carol Wojtalik. The program had a significant impact on Carol’s life as a participant, and she has gone on to become one of our most active, dedicated facilitators. We recently asked Carol to reflect back on her experience.
Here’s her story:
Where do I begin? I had just retired from a 35-year teaching career and was waiting for an epiphany. It came in an unusual form. I received a letter from Rush Generations inviting me to participate in a program called “Take Charge of Your Health.” My primary care doctor had suggested that I would be interested. Needless to say, my curiosity for learning made me sign up for the program. Continue reading →