A Caregiver’s Journey of Love

Shared by Howard Schnitzer:

Being a caregiver for my wife Chris in the face of Alzheimer’s has been an arduous journey, both emotionally and physically. Alzheimer’s is a relentless disease that tests the limits of one’s strength and resilience, but it’s the emotional toll that often feels the heaviest.

One of the most emotionally challenging aspects of this journey has been witnessing Chris’s expressions of longing for heaven. It’s heart-wrenching to hear her yearn for an escape from the torment of Alzheimer’s. The disease has transformed her from a top executive assistant, a woman of remarkable capabilities, into someone who struggles with basic functions. The transition has not only been difficult for Chris but for me as well.

In the midst of these heart-wrenching moments, I’ve made a commitment to make Chris’s good days the best they can be. I’ve had to learn to be more patient and understanding, as this disease has stripped away her abilities and left her vulnerable. It’s not easy, but it’s a testament to the strength and resilience that caregivers need to muster every day.

Through my experiences, I’ve learned valuable lessons that I hope can inspire and guide others in similar situations. The importance of seeking help and support cannot be emphasized enough. Caregivers should not bear this burden alone. Friends and community resources can provide the emotional strength needed to care for a loved one and lighten the load.

Self-care is another crucial aspect that should not be overlooked. It may seem challenging when your focus is primarily on your loved one, but taking care of yourself is essential to being a better caregiver and maintaining your own well-being.

Preparing legal and practical matters in advance has also been invaluable. Legal documents and frameworks ensure that Chris’s wishes are honored, and they help navigate the complexities that can arise in Alzheimer’s caregiving.

Learning to ask for help and being part of a supportive community of friends has been vital to my journey. Leaning on your support network during difficult times is essential. My involvement in a men’s support group for over twenty-five years exemplifies how communities can provide crucial support during trying times.

Through this journey, I’ve experienced significant personal growth and adaptation. My love and dedication to Chris have grown, and I’ve become more loving and supportive. We hold hands, express our love every day, and her care is my top priority. Caregiving is an immensely challenging and selfless role, but the bond it creates can be incredibly heartwarming.

It’s essential to remember that the Alzheimer’s journey is unique for each person, and while the challenges are significant, there can still be moments of connection and love. My dedication and love for Chris are a testament to the commitment caregivers make to provide the best possible care and support during these difficult times.

In the end, I find it most important to live by the caregiver’s “10 Commandments

  1. Never ARGUE, Instead AGREE.
  2. Never REASON, Instead DIVERT.
  3. Never SHAME, Instead DISTRACT.
  4. Never LECTURE, Instead REASSURE.
  5. Never Say REMEMBER, Instead Say REMINISCE.
  6. Never Say I TOLD YOU, Instead REPEAT.
  7. Never Say YOU CAN’T, Instead Say DO WHAT YOU CAN.
  8. Never COMMAND Or DEMAND, Instead ASK Or MODEL.
  10. Never FORCE, Instead REINFORCE.

In conclusion, being a caregiver to a loved one with Alzheimer’s is a journey filled with emotional and physical challenges. It’s a path that requires strength, resilience, and unwavering love. Seeking help and support, taking care of yourself, and preparing for legal and practical matters are all essential aspects of this journey. Through personal growth and adaptation, caregivers can find moments of connection and love even in the face of this devastating disease.

Alzheimer’s Association’s Digital Ofrenda to Remember those that passed from Alzheimer’s and dementia

“Having a loved one with Alzheimer’s or another form of dementia is heartbreaking. It is like losing them twice.” says Alzheimer’s Association’s Diversity & Inclusion Manager, Amelia Garza. Garza was a caregiver for her grandmother who suffered from the disease and after losing her in February, she set out to help connect families with a shared experience in the hopes of celebrating their loved ones’ lives together.

In partnership with the National Museum of Mexican Art and local artist Gabriel Moreno, Garza spearheaded the Alzheimer’s Association’s ofrenda installation as one of the pieces in the Museum’s Día de Muertos exhibit – Living Presence. The ofrenda celebrates the lives of four individuals, Maria B. Cerda, Jose R Gonzalez, Abraham Montelongo, and Socorro Rocha, who lived with Alzheimer’s or another form of dementia and is available to visit at the Museum from September 22nd through December 10th.

Not only will community members be able to see the physical ofrenda, but any viewer will be able to upload their own picture of a loved one who has passed from the disease to the Alzheimer’s Association’s Digital Ofrenda (also available at the following link: alzheimers-illinois.org/Ofrenda/).

Alzheimer’s is a disease that touches the lives of millions, and within the Hispanic and Latino communities, it strikes with a 1.5 times HIGHER incidence. With new treatments emerging, families will soon be able to have more quality time with their loved ones. However, these treatments are only effective during the early stages of the disease. “Given that Hispanic and Latino communities are less likely to receive an early diagnosis, I worry that our community won’t be able to benefit from treatments. The Alzheimer’s Association’s physical and digital ofrendas are a way for the community to realize that we are here. We are in your corner ready to fight with you. It also says that you have a community around you who has or is currently going through the same thing. You aren’t alone.”

As the dates of Día de Muertos draw near, we invite you to be part of this collaboration by sharing the news so that all of those affected by this disease can be together to remember their loved ones who have passed. By participating, you not only honor the memory of those affected by Alzheimer’s and dementia but also contribute to the Alzheimer’s Association’s mission to create a world without Alzheimer’s.

November is National Caregiver Month. Shelbi Vidmar shares her story as a caregiver for mom Sue

My name is Shelbi and my involvement in the Walk to End Alzheimer’s is a deeply personal and heartfelt journey. It began with the diagnosis and passing of my grandfather in 2007, which was a significant event that drew my attention to Alzheimer’s disease. However, my commitment deepened when my mother was diagnosed with early-onset Alzheimer’s in 2018. It prompted me to move in with mom and stepdad to provide care and support during a challenging time.

The Alzheimer’s Association played a crucial role in my journey, offering a lifeline for information, support, and connection. This led me to join the Alzheimer’s Walk committee, and found a kindred spirit in the committee head, Alison McEwen, who shared a similar experience with her father’s Alzheimer’s diagnosis.

The impact of Alzheimer’s on my life has been profound. My mother, who was a role model, a successful businesswoman, and my closest friend, was diagnosed at a young age of 57, making it particularly difficult. Being her caregiver for nearly four years presented both challenges and meaningful moments, and it culminated in the difficult decision to place her in a memory care facility in 2022. Despite the hardships, I find solace in the moments when my mom recognizes and lights up upon seeing her family.

I believe that raising funds and awareness for Alzheimer’s disease is critical. Many people underestimate the disease, viewing it as something that only affects the elderly or as an inevitable part of aging. I am determined to challenge these misconceptions because Alzheimer’s is a heartbreaking disease that affects both the individual and their family. I’ve actively worked to raise funds and advocate for the cause through events like my bowling fundraiser, where I raised $2,000, and additional efforts in August, bringing my total to $3,519.97.

I emphasize that Alzheimer’s takes a devastating toll, killing more people than breast cancer and prostate cancer combined, and affecting women more than men. My goal is to raise awareness and funds to find a cure for this disease and create more survivors, like my mother, who, despite her challenges, is doing relatively well at the age of 62. I highlight her love for visitors, treats, and being with her family and friends.

My story is a compelling testament to the impact of Alzheimer’s on families and the importance of continued support, advocacy, and research to combat this devastating disease.

Solstice Champion hosts golf fundraiser to honor wife

Alzheimer’s disease has affected me in the most life-altering way possible. Alzheimers took away my best friend and life partner of over 35 years: my wife, Susan. I had to watch as it took simple physical coordination away from a once world-class marathon runner. It took my future retirement plans and threw them out the window. The disease took my children’s mother and best friend; it took away a friend to many people; and it took a wonderful human from this earth. 

The saddest thing to deal with was watching the disease progress without being able to do anything about it. It felt like we lost her twice. Susan first became a different person than we all knew, and then physically passed. The single and only positive way Alzheimers has affected my life is that I now have a much greater appreciation of life, my family and my friends. I have always said “I love you” to people, but I find myself saying it more often. Don’t wait. Say it to those that mean so much to you.

We found tremendous support from Susan Frick and the Without Warning support group. Those get-togethers were so good for both my wife and myself. As a caregiver it was comforting to know I wasn’t alone with my questions, confusion, exhaustion and concern about the care we were all trying to give our loved ones. The bonding that took place between caregivers was swift, strong and comforting. We found others in similar situations that could offer advice and would understand our pain, our fears, and our frustration. 

An example of the bonds we created took place around Christmas. I was in my kitchen in Glen Ellyn having some melancholy moments about dealing with the holiday and trying to make sure my family stayed upbeat as it would mark one year since my wife’s passing. I got a buzz that someone was at the door, so I went down to the entry and there was a gentleman, Tom, from the Without Warning support group. He was there with a box of cookies and a hug just to let me know someone was thinking about me. I didn’t get a chance to tell him, but that one simple act carried me through the holiday with a smile in my heart. Don’t try to deal with Alzheimers alone. Get in a support group, go to therapy and lean on family and friends.

I started a fundraiser with The Longest Day in honor of Susan. I organized a golf outing–which seemed like a logical thing for me as I was retired from the golf business. My original goal was to have about 100 players and try to raise about $10,000. As things got into motion I quickly realized I had many more friends and supporters in my life! First, I got a big boost from the golf club where I work part-time in the summer, Boulder Ridge Country Club. Thanks to previous owners, the Plote Family, and the current owners, The Heritage Golf Group, they afforded me a generous discount on the complete package of golf, lunch and dinner. The fantastic staff at Boulder Ridge gave me so much help and support. I cannot imagine the event running as smoothly as it did without them at my side. Many of my fellow golf professionals donated gift certificates for rounds of golf that we auctioned off. 

Many friends from our past and present showed up to participate, sponsor, donate or help with registration and setup at the event. My fellow Rotarians from Buffalo Grove played and donated to the fundraiser. One super generous Rotarians case donated all the signs, banners and bag tags for the day’s events. Former employees of mine came from all over. Some who had worked for me during their high school and college days flew in for the event, some who worked with me up until my retirement showed support. The members of Boulder Ridge Country Club were and continue to be such great friends–not just during the event, but in the years preceding the event when they offered their friendship, support and love. Needles to say I had my family and three of my best friends urging me on and holding me up when I would wobble a bit. When it was all said and done my event had 186 golfers and nearly 200 for dinner. The final amount raised was over $32,000.

One of my all time favorite movies is Shawshank Redemption. One of my favorites lines is, “You got to get busy living or get busy dying.” In dealing with the loss of Susan, the idea of “get busy dying” would have been to sit and feel sorry for myself, my family and Susan–to sit in my misery without doing anything. That did not seem like an option for me nor one that would make Susan or my sons proud of. I chose to “get busy living” by helping raise awareness about Alzheimer’s disease and raising funds for Alzheimer’s research so that hopefully the next generation doesn’t have to deal with this horrible disease. As the population continues to live longer, Alzheimer’s unchecked will start affecting more and more of us. If we put people on the moon and bring them back, we can do this: we can end Alzheimer’s in our lifetime. More awareness means more funds raised, and more funds raised means hope for the future.

The thing I would like people to understand about Alzheimer’s disease is that it can happen to anyone. My wife Susan had no family history of Alzheimer’s. She exercised every day, she ate healthy, stayed mentally active and could have been the poster child for someone least likely to be afflicted, especially at the age of 54. It can happen to anyone and that is why it is so important to raise awareness. If it does happen to someone in your care, please do not face it alone. Join a support group, reach out to family and friends and know that you are not all by yourself. Sometimes people are a little hesitant to reach out to you first because they don’t know what to say or do. If you reach out to people first you will be amazed how much just having someone to talk to can help. I was always fortunate to have friends I could count on, but the depth and sincerity of those friendships amazed me and certainly carried me though those most difficult days.

How Different Types of Dementia Affect the Brain

Restituto Miranda Sr. occasionally reminisced about driving a taxicab, working in an office supplies store and riding his motorcycle.

But there was one problem: To the best of his family’s knowledge, Miranda — who had worked as a meat cutter with the American Meat Packing Corp. in Chicago — never had done any of these things, says his son Resti Miranda Jr.

Seeing how happy he seemed telling the stories, family members didn’t correct the elder Miranda, diagnosed in 2014 with vascular dementia after experiencing a second stroke. Dementia can affect a person’s brain in such a way that individuals may remember only fragments of something that occurred years earlier, or they may make up stories.

The elder Miranda passed away in January 2020 at the age of 82. It was hard, Miranda Jr. says, to see his once-healthy, strong father fight through complications from two strokes and vascular dementia.

All dementias involve changes in the brain, but symptoms vary. Alzheimer’s disease comprises 60% to 80% of dementia cases. Here are some other types:

Vascular dementia

Vascular dementia, which can occur after stroke or heart disease, is one of several types of dementia, says Terrianne Reynolds, director of healthcare initiatives at the Alzheimer’s Association, Illinois Chapter

This type of dementia can result from brain damage due to impaired blood flow and other conditions that damage blood vessels and reduce circulation, such as atherosclerosis, heart disease and stroke.

Vascular dementia is marked by a decline in thinking skills caused by conditions that block or reduce blood flow to the brain, depriving brain cells of vital oxygen and nutrients. “These changes can sometimes occur suddenly following strokes that block major brain blood vessels,” Reynolds says.

Symptoms include memory loss, confusion, language problems, difficulty paying attention and visual orientation problems. These symptoms may develop gradually or become apparent after a stroke or major surgery such as heart bypass.

While tests can determine that you have dementia, there’s not a specific test that confirms vascular dementia, according to the Mayo Clinic. Your symptoms, medical history, and history of stroke or cardiovascular issues can point to vascular dementia.

Lewy body dementia

Lewy body dementia is an umbrella term for two related clinical diagnoses: dementia with Lewy bodies and Parkinson’s disease dementia. The most common symptoms are changes in cognition, movement, sleep and behavior. Lewy body dementia typically begins at age 50 or older, although sometimes younger people develop it.

In the early stages of Lewy body dementia, symptoms can be mild, according to the National Institute on Aging (NIA). But as the disease advances, people with Lewy body dementia need more help — and eventually often depend entirely on others — because of the decline in their thinking and movement abilities.

Some Lewy body dementia symptoms may respond to treatment for a period of time, but there’s not yet a cure. However, the NIA reports that research is improving scientists’ understanding of this condition. That knowledge may one day lead to earlier diagnoses, improved care and new treatments.

Frontotemporal dementia

Frontotemporal dementia is a group of disorders caused by progressive cell degeneration in the brain’s frontal lobes (the areas behind the forehead) or its temporal lobes (the regions behind the ears).

The most common dementia for those under 60, frontotemporal dementia is misunderstood and frequently misdiagnosed as Alzheimer’s disease, Parkinson’s disease, depression or a mental health disorder, according to the Association for Frontotemporal Degeneration. It takes an average of 3.6 years to receive an accurate diagnosis, the association says.

Mixed dementia

When symptoms of more than one type of dementia occur simultaneously, it’s called mixed dementia. The likelihood of having mixed dementia increases with age and is highest in people age 85 and older.

The Alzheimer’s Association Illinois Chapter is hosting a research symposium. This event is dedicated to honoring National Family Caregivers Month, recognizing the vital contributions of caregivers, increasing awareness about their role, and providing valuable information and resources.

Symposium Highlights:

Date and Time: Friday, November 3, 2023, starting at 09:30 AM (CDT).

Location: Feinberg Pavilion Conference Center, Northwestern University, 251 E Huron, 3rd Floor, Chicago, IL 60611.

Purpose of the Symposium: 

“By hosting this annual symposium, we have the opportunity to bring together over 300 caregivers, patients, families and healthcare professionals to learn about the latest in Alzheimer’s and dementia research and the Association’s role in driving and leading global research initiatives. We are also able to provide the attendees with information, tools, and resources,” said Olivia Matongo, Vice President of Programs, Alzheimer’s Association.

Key Speaker: Heather Snyder, Ph.D., Vice President, Medical & Scientific Relations at the Alzheimer’s Association, will lead a discussion on an overview of the new of era treatment which includes activities happening at the Association to advance research. The keynote discussion will also address access to the services, programs and awareness to diagnose and treat dementia, as well as support provided. 

Professional Track 

Drug Development: An overview of the drug development process to include discussion on clinical trials, the phases of trials, how to participate, and why older and diverse participants are essential in clinical research. 

Detection: An overview of the current Alzheimer’s and memory concerns landscape. Discussion will include the importance of early detection in the new era of treatment as it relates to medical benefits, emotional and social benefits, more time to plan for the future and cost savings.

Family Track

Cultural Considerations in Dementia: Discussion on the recognition of dementia across cultures including cultural specificity of screening tools, identification of differences in risk factors, incidence, onset and prevalence across cultures and culturally related issues in decision making about management. 

Behaviors: Identify common triggers for behaviors associated with dementia. Explaining the process for assessing and identifying challenging behaviors and strategies to address common dementia – related behaviors.

New Anti-Amyloid Therapies: What do you need to know? 

Panel Discussion (all attendees) Discussion on current therapies that are now available and understanding the target audience for the therapies. Discussion on the process of administering the drug and the patient experience in the new journey of new treatments. The discussion will feature two early stage patients who are on Leqembi and Adulhelm. 

Who Should Attend: The symposium offers tracks tailored for various groups, including:

  • Individuals with early dementia or Mild Cognitive Impairment (MCI).
  • Family members, friends, or non-professional family care partners of individuals with dementia.
  • Professional caregivers, direct care staff, and administrators (Please note: No continuing education credits offered in this category).
  • Health and allied health professionals eligible for Continuing Education Units (CEU) or Continuing Medical Education (CME) credits.

Continuing Education: Professional II attendees (health and allied health professionals) are eligible to earn 3.0 CEU or CME credits. Eligible professionals for continuing education credit include counselors, dietitians/nutrition counselors, marriage and family counselors, nurses, nursing home administrators, occupational therapists, physical therapists, physicians, psychologists, respiratory therapists, social workers, and others (inquire at omatongo@alz.org).

This symposium promises to be an informative and impactful event for those involved in Alzheimer’s and dementia care and research. It offers an excellent opportunity to learn, connect, and contribute to the fight against Alzheimer’s disease.

To register please click here