Oct 232013
 

flu vaccine and Alzheimer's‘Tis the season for flu vaccine! Every year we get calls from people asking if there is a link between the flu vaccine and Alzheimer’s disease. This is an idea that came about more than a decade ago and has been debunked many times over.

Fact:  Several mainstream studies link flu shots and other vaccinations to a reduced risk of Alzheimer’s disease and overall better health! For example:

   A  2001 Canadian Medical Journal report suggests older adults who were vaccinated against diphtheria or tetanus, polio, and influenza seemed to have a lower risk of developing Alzheimer’s disease than those not receiving these vaccinations.

The bottom line is that you should speak to your doctor about whether or not you should get a flu vaccine this year and don’t let fears of Alzheimer’s risk stop you!

About the  author: Elizabeth Edgerly, Ph.D., is the chief program officer for the Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Dr. Edgerly, click here.

This post originally appeared on www.alzheimersblog.org.

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Sep 242013
 
single flower walk

The first change I noticed in my dad was his inability to write out checks.  I stopped by his office one day, and he was sitting at his desk with the checkbook open.  Several balled-up checks were scattered on his desk. He was slow to speak, but finally admitted that he could not write out the check correctly. On one check, he had transposed the numbers for the amount to be paid.  On another check, he had attempted to write his name on the “payee” line, but the scrawl did not look like his signature.  He was so frustrated, confused and scared. This was so unlike him—a man who had always been so confident, organized and in control. This was just the beginning of many changes in his personality and behavior.

My dad had Alzheimer’s, a progressive disease that robs the mind. It also breaks the hearts of family members who helplessly watch as their loved one slips away.

Fred Is Not ForgottenAs time went on, my dad, who had always been an impeccable dresser, no longer seemed to care about his appearance. He would mix prints with plaids, and chose to wear the same red sweater every day, even though he had a closet full of clothes. Eventually, he had to go into a 24-hour nursing facility, as he would wander at all times of night and became combative.

It was devastating for family and friends when we realized that he had slipped into his own little, confused world and did not recognize any of us. At times he mistook me for his sister or his wife.  Later, he ignored everyone but my brother, and their discussions were limited to talking about the family business. Eventually, all of his visitors were greeted by a blank stare.  As his journey came to an end, his muscles became rigid.  He could no longer sit up or walk.  He died in a fetal position, three years after the initial diagnosis.

His bout with the disease was relatively short in comparison to that of many victims, but his condition, decline and death have had a lasting effect on me. Twenty-five years later, every time I forget a word needed to complete a sentence or forget where I put something, I fear I may have the same fate.  Since his death, more attention has been given to Alzheimer’s; however, more attention is needed. It is now the sixth leading cause of death and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

On October 13, 2013, I will Walk to End Alzheimer’s at Tower City Center in Cleveland, Ohio.

I will walk in memory of my dad, Fred Grair, Sr., and other family members who have been affected by Alzheimer’s.

walk to end crowd

I will walk to allay my fear of contracting the disease.

I will walk on behalf of the more than 5 million Americans who are living with Alzheimer’s.

I will walk to raise money for Alzheimer’s awareness, support, care and research.

I will walk for you.

Today, more than half of all Americans know someone with Alzheimer’s.  If you have not been impacted in some one by this terrible disease, consider yourself fortunate.  Soon, no one will be untouched.  Please walk with me to end Alzheimer’s.

About the blog author:  Stephanie Grair Ashford is steering committee member and team captain for the 2013 Walk to End Alzheimer’s in Downtown Cleveland, Ohio.  You can donate to her team, Fred’s Not Forgotten.

This column originally appeared in the Sun News.

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Nov 062012
 

This blog is dedicated to three of our First Ladies who have led the crusade for caregivers: Hillary Clinton, Nancy Reagan and Rosalynn Carter.  All three are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves.

Hillary Clinton – The Congressional Caregiving Champion

Photo: Numinaimages

It was a poignant moment when I read last November 1 that Hillary Clinton had lost her 92-year-old mother, Dorothy Rodham.  Poignant for two reasons:

1)    November 1 marks the beginning of National Family Caregiver Month

2)     Clinton had been a long-time advocate of the nation’s caregivers when she was a Senator from New York.  She supporting several pieces of proposed legislation that offered more services to support those family members who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible. 

Her mother’s illness, a topic that was kept private from the invasive world of 24/7 news media, made Clinton one of those caregivers she had championed so often in Congress.  In an interview from Clinton’s campaign days for the Democratic presidential nomination, she credited her mother with giving her the tools — and toughness — to enter politics.  In the end, her mother had also given her daughter the tools to be a compassionate caregiver.


Photo: Richard Guinon/Dreamstime

Nancy Reagan – The Loving, Long Good-bye to a Spouse with Alzheimer’s

Nancy and Ronald Reagan’s touching affection for each other was evident in the letter former President Reagan wrote to tell the world he was suffering from Alzheimer’s disease.  In this letter, President Reagan not only helped shine his celebrity spotlight on a disease which many Americans did not understand, but he also highlighted the concern he had for Nancy who would be caring for him.  He understood the difficult emotional toll it would take on his wife.

 

As the caregivers of today’s more than 5 million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers as “the long good-bye.” While Nancy had the resources to care for her husband in ways most Americans do not, the emotional toll it took on her cannot be ignored.  

What was perhaps most heartwarming was that the strained relationship Nancy had with her stepchildren and with her own son and daughter actually improved over the course of President Reagan’s disease diagnosis and decline.  Family dynamics are sometimes difficult to navigate during caregiving and can lead to added stress and strife.  But, in this instance, it brought a family closer together which is one of the gifts that can come from caregiving.

Since President Reagan’s passing, Nancy has become a passionate advocate for Alzheimer’s disease awareness and education and especially advocating for the research around embryonic stem cells that can hopefully lead to a cure.  She also speaks about her personal caregiving journey and the need to recognize caregivers as a crucial part of the “care team” around a loved one.

Rosalynn Carter – Caring for Parents On Both Ends of Her Life

Photo: Wayne Perkins/The Carter Center

Long recognized as one of the pioneers of the caregiving movement, Rosalynn Carter is known for her famous description of the life event of caregiving in America:

You have been a caregiver

You are a caregiver

You will be a caregiver

Or someone will be caring for you

 In her book, Helping Yourself Help Others – A Book for Caregivers, former First Lady Rosalynn Carter writes, “We can learn to approach caregiving as a blessing as well as a challenging task.” 

She knows of what she speaks firsthand:  Rosalynn was only 12-years-old when her father was diagnosed with terminal leukemia.  As the eldest daughter, she helped care for her ailing father and supported her mother by also caring for her younger siblings.  She took up caregiving again for several relatives with cancer after she left the White House and most recently was caregiver for her mother who died in 2000 at age 94.

Rosalynn’s gift to caregivers comes from a lifetime of understanding the challenges — emotional, physical and financial — that accompany caring for a loved one.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University in Americus, Georgia.

While women may be seen as “the power behind the throne,” these First Ladies are proof that women also put the heart into caregiving.

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Oct 192012
 

Choice is a luxury and usually a gift.  As a caregiver to a loved one, the absence of choice is a difficult concept to grasp when you are accustomed to the illusion of choice and control in your life. It is earth- shaking to have circumstance thrust upon you, pushing you towards decisions that may go against your grain. - Tania Richard

My mother was diagnosed with dementia in the summer of 2011.  At the time, my youngest kids were three and one. My blended family includes my husband, four kids and a large sheepdog living in a three bedroom townhouse. There was no room for my Mother to live with us comfortably, and no funds to pay for a 24-hour caregiver, which she needed because she could not be left alone.

My parents didn’t plan for their retirement. Their choice determined that I had few options when it came to choosing where my mother would live. The nursing home with a dementia unit I chose would have to be one covered by Medicaid.

She would be fed, clothed and housed with no adornment or extra amenities. My Mother, a private woman, would share a room with two other people.

I could choose to wreck myself over the fact that my Mother was living there, or I could choose to accept it and focus on the fact that she was safe and physically sound.

I had to remind myself that my Mother had not been living a quality life for the past year as her home fell into disrepair and her hygiene declined. The nursing home would be an improvement. I would have to tell myself that every time I visited her.

She was happy in her new environment and made new friends. My Mother before her diagnosis would never have been happy in the nursing home. My Mother with dementia was quite content.

Finally, I felt as if I could make a choice that would empower me and the Serenity Prayer was a guiding force:

            God, grant me the serenity to accept the things I cannot change,
           Courage to change the things I can,
          
And wisdom to know the difference.

 These are wise words for caregivers to live by as they navigate the world for the person in their charge.

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About the Blog Author Tania Richard
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

Oct 152012
 

My favorite cartoonist, the late Charles Schulz of Peanuts fame, wrote that, “Happiness is a warm puppy.” I wonder if he knew that happiness is just the start when it comes to enhancing the lives of older loved ones in nursing homes or assisted living, terminal patients such as those suffering from AIDS, children with special needs and even caregivers looking to improve their own health. Known as Animal-Assisted Therapy (AAT), there is a growing movement to increase animal/patient interactions for health and wellness benefits.

The notion of pet therapy all began in the 1860s although most of the studies were conducted in the 1980s. While the medical community is still waiting for scientific data that shows pet therapy can have long-term or behavioral change benefits, even famous nurse Florence Nightingale recognized that animals provided a level of social support in the institutional care of the mentally ill over 150 years ago. In an effort to prove the therapeutic benefits of pet therapy, the National Institutes of Health has funded grants to study scientific evidence-based research in therapeutic effects on children.

You may have read about the dogs that can smell cancer in their owner long before a formal diagnosis is made, help calm children who have an epileptic seizure or even bring people out of comas. One story from Pet Partners (formerly known as the Delta Society) is that they were called to visit a terminally ill patient. When the handler arrived with her cat, the patient had slipped into a coma. As the handler put the cat into the bed, the patient suddenly awoke, removed his arms from under the sheets and started to pet the cat. I truly believe animals have special healing powers and a sixth sense. To back up my notion, I read that Dr. Edward Creagan of the Mayo Clinic Medical School observed, “If pet ownership was a medication, it would be patented tomorrow.”

While dogs, cats and rabbits are most commonly used with older patients, dolphins and horses have also proved effective with children with mental health issues, epilepsy, physical disabilities or autism. The biggest benefits of cozying up to a “warm puppy” are:

Socialization
Older loved ones often feel isolated whether living alone at home or in a facility such as a nursing home or assisted living. In fact, Human-Animal Interactions published a study of elderly dog owners revealing 75 percent of men and 67 percent of women considered their dog their only friend. Some studies have found that just a few minutes a day petting or visiting with an animal lowers the stress hormone of cortisol and increases the feel-good hormone of serotonin. The results can range from lowered heart rates and blood pressure to decreased depression. For older loved ones still living at home, if they can manage the daily needs of a pet (feeding, walking), some surveys have found that the interaction and companionship of a pet can improve your loved one’s health through increased physical activity and even lower pain levels in some arthritis patients.

Emotional
Depression in older patients can be common, especially if they recently lost a spouse, received a terminal diagnosis or had to move from the comforts of home. Pet therapy or even a new pet can provide unconditional love, comfort and helps reduce anxiety, particularly noted in nursing home patients.

Many assisted living facilities now have a Pet Care Coordinator to help seniors care for their own pet. If an owner forgets to feed the pet or it becomes too difficult to walk them frequently, the Pet Care Coordinator can help keep pets up-to-date on veterinary visits, grooming and vaccinations. Silverado Senior Living, which includes memory care facilities for Alzheimer’s and dementia care residents, encourages pets in the facility – both privately owned pets and visits from pet therapy organizations. Pet therapy for those with Alzheimer’s or dementia has also proven to be a powerful tool for what is known as “sundowners,” the evening periods where patients become agitated or confused.

Animals have even proven to be valuable members of the hospice team for a terminally ill loved one. There is a famous cat in Providence, Rhode Island known as Oscar who is one of the critical members of the hospice team in the local nursing home. Patients and family members have reported that when Oscar would enter the room, there was a sense of calm—even though Oscar was known by residents as visiting a room when someone was dying. As opposed to a bad omen, Oscar brought comfort and peace to both the patient and their family members. Oscar stays with the patient, sitting quietly in their lap or on their bed where he remains until the loved one has passed.

For children with autism, pets can improve their communication skills, which can often be stressful. Because animals are non-judgmental, special needs kids relax and are able to absorb other benefits during their pet therapy sessions. Animals’ nonverbal communication and profound acceptance can be soothing for those with difficulty using language. Hippotherapy, which is therapeutic horseback riding, is practiced in 24 countries and benefits those with physical, psychological, cognitive, social, and behavioral problems. In fact, the American Speech and Hearing Association now recognize hippotherapy as a treatment method for individuals with speech disorders. While some benefit from the connection and the relationship built with the horse, other riders benefit physically from the movements that help build core strength, body awareness and muscle memory.

Pets can also benefit the caregivers. Caregiving can make you feel like you are all alone. While adding a pet to the list of loved ones you have to care for may seem like overload, having that happy face and wagging tail ready to give you some unconditional love when you return home can benefit caregivers as well. Studies have found that caregivers are twice as likely as the general public to develop chronic illness due to the prolonged stress of caring for a loved one. If having a pet can increase your exercise, lower your blood pressure and bring a smile to your face – maybe finding a Lassie, swimming with Flipper, holding Thumper or riding Mr. Ed is just what the doctor has ordered.

Pet therapy organizations
Following are organizations where you can find pet therapy handlers/animals or participate in caregiving pet events:

Pet Partners (formerly Delta Society) Therapy Animal Program trains and screens volunteers with their pets so they can visit patients/clients in hospitals, nursing homes, hospice and physical therapy centers, schools, libraries and many other facilities. The Pet Partners Service Animal Program provides information and resources for people with disabilities, as well as their friends and family, who are considering getting a service animal or who are currently partnered with a service animal.

Pets for the Elderly Foundation matches seniors with cats and dogs by underwriting the pets’ adoptions.

Therapy Dogs Inc. is a national registrar with a listing of more than 12,000 handler/dog teams in U.S. and Canada. The organization provides registration, support and insurance for volunteers who want to provide pet therapy services.

Numerous organizations in local communities, including Pet Therapy, a non-profit organization in Southwest Florida, bring pets into nursing homes for weekly visits with puppies and dogs brought by adult and even child volunteers.

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Sep 192012
 

For the past eight days, I have been walking—a journey of more than 200 miles in total. I chose to make this trek for each and every one of more than 5 million people suffering with Alzheimer’s disease—and in particular, for my father, Lt. Col. Carl Rabon Stephens, who is a retired army chaplain.

Why am I walking to Washington, D.C.?  Because we need to ensure the passage of $100 million dollars for Alzheimer’s research and support programs in the FY2013 federal budget.  The opportunity to elicit change is now and it begins with me.  My voice is powerful, and I want to use it on behalf of my dad.

My father spent his whole life caring for others in crisis and Alzheimer’s disease no longer allows him to do so. In just one short year, he lost the ability to continue his work with chaplains at Walter Reed Hospital as an expert on how to counsel soldiers coming home from Iraq.  The idea that one day he will no longer have these memories—those of his family and the countless families he has helped—is unbearable.

My father was recently moved into a nursing home because his wife and I can no longer provide the level of care he now requires.  As families each and every day shoulder the tremendous emotional, physical and financial toll of caring for a loved one with Alzheimer’s day after day, year after year, they need action today. They cannot wait and neither can I.

I am walking to Washington, D.C. to bring awareness to this worldwide health crisis and help focus attention on the urgent need for more research funding to help find effective treatments and ultimately a cure.  The current national level of Alzheimer’s research funding pales in comparison to other diseases and the time is now to attack this problem with the same level of commitment that we have other major life threatening diseases.

The investments made in research funding for cancer, heart disease and HIV/AIDs (close to $14 billion combined annually) have had positive results. They have resulted in more lives saved and more money saved in direct care costs. As a nation, we are currently investing nearly $500 million for Alzheimer’s research and Alzheimer’s will cost the nation $200 billion in direct care costs in 2012 – this includes $140 billion in Medicare and Medicaid costs. There is something wrong with this picture!  I am walking to create a picture, a new future and new possibility. I am walking to help change the trajectory of Alzheimer’s disease.

During my journey, I plan to bring this to the attention of any and all I can, through local, regional and national media, and by sitting down with as many elected officials as will meet with me. While my voice is powerful, our voices together are more powerful.

I want to encourage others—volunteers, caregivers, people with the disease, family members, YOU — to join me. Tell your story and reach out to your members of Congress to urge them to ensure the inclusion of $100 million in Alzheimer’s research funding in next year’s federal budget.  Sign up for a local Walk to End Alzheimer’s®. Sign up to be an Alzheimer’s advocate. Be part of the movement to end Alzheimer’s.  There is not a lot we can do for those who have passed on or who are currently fighting this disease, but we owe it to them to do everything we can to treat and ultimately end this insidious disease for future generations.

Together we can shift the course of Alzheimer’s disease.  Now is the time! Please join me!

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About the Blog Author: Dave Stephens is the President of the Board of Directors of the Alzheimer’s Association of South Eastern Virginia. His father, Lt. Col. Carl Rabon Stephens, is living with Alzheimer’s. Dave resides in Virginia Beach with his wife, Debbie, and is the proud father of a 21 year-old daughter.

 

Sep 182012
 

To support causes near to her heart, jewelry designer Holly Freeman started a line of limited edition pieces with friend and actress Jamie-Lynn Sigler.  In honor of World Alzheimer’s Month, the two philanthropists designed a purple bracelet. Proceeds go to the Alzheimer’s Association. 

Alzheimer’s has touched so many.  I know firsthand.

 My grandfather was an incredibly talented artist. His works spanned from beautiful flowers and landscapes, to drawings of my favorite cartoon characters he made just for me and my friends. His mind was as precise and colorful as the paintings and drawings he created.

 But Alzheimer’s changed that. The details and precision that had always been a hallmark of his art started to shift. There were inaccuracies—the first sign to me that his health, and more specifically his mind, were declining. 

 As we spent time together while I attended college near his home, the changes became more and more painful to watch. Alzheimer’s was slowly taking him away – and more than anything, I wanted to be able stop this devastating disease.

 There were good days when Poppy would turn and look at me with a half smile when I called his name or squeeze my hand when we were sitting together. These moments were small gifts – moments of recognition.  But as the disease progressed, there came a point when my grandfather didn’t recognize me at all.

 I don’t want any other granddaughters to lose their grandfathers to Alzheimer’s disease. That’s what is driving me to help fund research, programs and care for people dealing with this disease. I’m taking action not only for the sake of the individuals suffering, but also to spare their loved ones the pain of simultaneously living through this disease.

 Back when my grandfather was diagnosed, we didn’t have such easy access to information. People weren’t on the Internet sharing their stories.  But today, we have the opportunity to come together and support one another. And we each have the opportunity to take action.

 Friday September 21 is Alzheimer’s Action Day. If we each choose to do something – even if it is as small as talking openly about Alzheimer’s – we can raise awareness, get more funding for treatments, and move closer to a future where our children won’t see their grandparents, their parents or anyone else slowly be taken by this disease.

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This blog was first published by heart coach Amanda Daniels on her blog Voicestoshare.com.

A note from Amanda:
I met Holly five years ago in a baby group class. We immediately connected through our passion for jewelry and philanthropy. Her line, CJ Free Jewelry, is unique and timeless.  Last year Holly and her business partner, actress Jamie-Lynn Sigler, approached me about creating a red-corded bracelet in honor of my battle against heart disease.  I jumped at the opportunity to raise money and awareness for the American Heart Association. Today, Holly and Jamie are launching a new campaign with a limited edition bracelet to raise money and awareness for the Alzheimer’s Association. Alzheimer’s is an illness that is close to Holly’s heart. I’m honored to share Holly’s voice.
–     Amanda

Sep 052012
 
K_Murray_headshot

I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.

I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.

There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.

I want people to know the truth about Alzheimer’s disease. That it’s not a mental disorder or “just a little memory loss.” It’s the most common form of dementia. And it’s a progressive disease.

I speak up and tell people about my diagnosis and take as much time as I need to educate them. I want them to have a better understanding of Alzheimer’s. I want them to know there is much more to the disease than the late stage. Someone with Alzheimer’s doesn’t have to be in a wheelchair or lying in a hospital bed; they can be like me, still able to travel and live life to the fullest. Maybe they are not at the top of their game, but they have found ways to adapt. Like me, someone with Alzheimer’s can still be functional and independent. I still have so much to contribute.

It’s not always easy to speak up about Alzheimer’s. Even now, several years after my diagnosis, it can be very difficult for me. 

Last week was Robert’s birthday. He received a card from friends that read something like, “At your age, we knew you wouldn’t remember we sent the same card last year!” Robert and I just sat and looked at each other.

Kathy Murray is living with Alzheimer's disease.This isn’t an issue about a level of education or intelligence. We’re fighting against popular culture. This is about awareness and education around this particular disease.

Keep talking openly about Alzheimer’s, and little by little, it will get easier. Sometimes you have to put yourself out there, and that’s not easy for everyone. Make sure your friends and family members are educated about the disease. They can speak up on your behalf, too.

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About the Blog Author: Kathy Murray is an alumna of the national Alzheimer’s Association Early-Stage Advisory Group (2011). She lives in Frankford, Del., with her husband, Robert. Kathy and Robert have two sons, Robbie and Bryan, and six grandchildren.

Aug 302012
 
Rob Epp is a full-time Alzheimer's caregiver for his partner Jordan.

Courage is the thing you need most and the hardest thing to get when you’re faced with Alzheimer’s Disease.

Jordan, my partner of 17 years has younger-onset Alzheimer’s. His father and several grandparents had memory problems, so the diagnosis was not totally unexpected, but it is still hard to grasp that someone so young and vital is facing such a ravaging illness.

Since Jordan’s diagnosis four years ago, we’ve both experienced the stigma that is attached to this disease. At the time of Jordan’s diagnosis we were lucky to live in Seattle where awareness of Alzheimer’s is high. That helped us avoid many problems that I know others experience from the medical establishment. But we’ve each had to handle other issues. Memory problems in older people are expected and tolerated. Memory problems in younger people are often seen as a serious defect.

One situation that stands out in my mind happened on a visit to Florida. After his diagnosis Jordan had severe depression and anxiety, and he was taking a powerful combination of medications, which caused him to lose his balance. He decided to walk several blocks to the beach at sunrise one morning and fell. A police officer happened to be in the area and stopped in his car. His response was “Sir, Are you drunk?” Jordan responded “No. I have Alzheimer’s.” The officer repeated that he felt Jordan was drunk and drove away leaving Jordan on the ground.

My experience with stigma was at work. Because Alzheimer’s remains a diagnosis of exclusion, it takes a tremendous amount of testing to reach that conclusion. I was taking more and more time from my high-pressure job for doctor visits. Jordan and I were also emotionally reeling from new memory problems that would appear weekly. (At one point, Jordan put socks in the fridge.)  I decided to take a leave of absence. When I returned, I found that a shadow replacement had been hired, and I was forced to leave six months later.

Finding courage

When faced with discrimination you must have the courage to say “I’m here and just as important as anyone else.”  We all have weak moments but fighting the illness sometimes means fighting for yourself or your loved one. Breaking Past the Stigma of Alzheimer's: Rob Epp's Story

There is stigma or discrimination surrounding any serious illness. Just ask someone with Parkinson’s or cancer or multiple sclerosis. But, we’ve also have found that people are generally supportive when they are aware. Many “stigma moments” are really caused by ignorance. People don’t understand Alzheimer’s and many even don’t understand what it means to be chronically ill.

So often, people only think of Alzheimer’s as an end-of-life illness. Even in hospitals nurses will say “but he’s so young to have it.” Courage to change the public perception thru education and awareness is key. And it’s usually accomplished one person at a time through personal contact.

Silence is the enemy

Alzheimer’s Disease consumes a tremendous amount of energy and resources. Families are often exhausted by the sheer volume of care responsibilities. And yet this disease is very poorly understood so we also carry the burden of having to educate others.

Jordan quickly tells people that he has Alzheimer’s in phone calls and in person so they understand. He also has cards for this purpose. Family is kept updated about his condition and even the little ones are told what to do if there is a problem. But education is also reaching out to the public.

I find time to do advocacy for the Alzheimer’s Association. It’s not easy since I don’t have family to help care for him when I’m gone, but it’s essential to raise awareness and unite people in the effort to fight this illness and help the people who have it. If people understand then they won’t be afraid. And if they’re not afraid then there is no stigma – just the disease.

Learn More:

About the Blog Author: Rob Epp is a full-time caregiver for his partner Jordan, who was diagnosed with younger-onset Alzheimer’s four years ago. They live in New Hampshire.

Photos by Shannon Power

Jul 302012
 
Photo courtesy of Kristine Walsh

Caregiving blogger Sherri Snelling spoke to actors Jill Eikenberry and Michael Tucker about their journey in caring for Jill’s mother who has dementia.  At the heart of their story is family and how “eat, pray, love” may be their new catchphrase when it comes to caregiving. 

What struck me the most when I spoke to Jill Eikenberry and Michael Tucker – her partner in marriage, career and life – was that in all things they are a team.  We even did the interview with the two of them together, at their suggestion, and it gave me a glimpse into how their special bond of support, respect and caring for each other is a recipe for all couples who face a tough caregiving situation.  In fact, their story is about love of family and food and the ingredients needed to keep it all cooking.  Jill and Mike are like salt and pepper shakers – two distinct personalities and characters – but you never pass one without the other.

We all watched them as one of our favorite TV couples in the 80s and 90s in their roles on the Emmy-winning series L.A. Law (what boomer woman can forget the famous Venus Butterfly episode?).  Since then, both Mike and Jill have thrived as solo artists – Mike as an actor and as an acclaimed author, and Jill as a continually sought-after star on stage and screen with her latest turn in the movie, Young Adult.   However, it is when they are performing together – whether it is playing the couple in Broadway’s Love Letters, or caring for Jill’s mother with dementia – that they really are at their best.

 Our House in Umbria

For many years, New York City-based Jill and Mike, have been vacationing with friends – sometimes for weeks, other times for months – in the lovely Italian countryside in the Spoleto Valley of Umbria, Italy.   This is where the couple recharges – the sumptuous food that infuses Mike’s meals, the chilled wine, the warm people, the beauty of the olive trees and the vineyards versus the urban jungle – it is their version of Cinema Paradiso.

It was on one such trip about six years ago that Jill and Mike went from the calm of their Italian reverie into the storm of caregiving.  Jill’s mom, Lora, was 87-years-old at the time and had been living in a Santa Barbara, Calif., assisted living facility for several years with her husband, Ralph.  Although Lora had been hard of hearing for more than 40 years and had been experiencing some memory lapses, she was in pretty good health for an octogenarian.  But Jill had recently grown worried.  Her mom had started having paranoid fantasies according to Ralph and she had survived a fall, which according to the Centers for Disease Control puts 2 million seniors into emergency rooms every year, and Ralph was not in good health.  Just a few days into their latest Italian sojourn, Jill and Mike got the call that Ralph had died.

“All of a sudden I felt so far away,” says Jill.  She had been anxious of leaving her mom before this trip and now the guilt washed over her for not being by her mom’s side.   As the weeks rolled by after Ralph’s funeral, Jill’s daily phone calls to her mom could no longer bridge the 3,000-mile distance.   After a few in-person visits and more falls, it became clear to Jill that her mother needed more care. But, moving her into the assisted living’s dementia care center seemed wrong.  Jill still was not sure Lora was “there yet,” Lora would be isolated from neighbors and friends and as Jill says, “It just wasn’t family.”

While at first Mike felt some resentment as his Umbrian dreams were put on hold and his concerns mounted about the toll this would take on his wife, he said, “Jill’s focus was on her mom but my eye was on Jill.  My new job was to help her do the right thing.”

 Mamma Mia!

One of the toughest decisions for caregivers, especially those 7 to 8 million long-distance caregivers of older parents, is wondering whether it is better to have them live in a special facility that can provide the care they need or move them into your home or closer to you so that you can care for them.

“My mom was calling people at all times of the night, wandering off and eventually it got to a point where she was physically attacking the nurses caring for her after a bad fall,” says Jill.  “One night we went to dinner with our son Max, and he said what I had been in denial about, ‘you have to move Lolo to New York City.’  At that moment I looked over at Mike and he just nodded and I knew this is what we had to do.”

Many caregivers of older parents, even those who are married or who have siblings who can help, often tell me they feel “all alone.”  While Jill is an only child, the secret ingredient in her caregiving situation is that she never had that feeling – she had Mike.

“It was a huge moment in that restaurant when I looked at Mike and I just knew no matter what, he was going on this journey with me,” says Jill.  “Believe me, the last thing Mike wanted to do was have my mother in our lives every minute.  Even though he loved her, Mike felt my personality changed, and not for the better, when I was around my mother.” Now, not only would Mike have Lora in the same city but he would have to live with the “two Jills.”

What came next is something almost all caregivers face because so few families have that essential caregiving conversations before a crisis hits. (In fact, only one-third of all caregivers have had any conversation with their older loved one about long-term care.)   Jill and Mike had to look for the paperwork to close Lora’s bank and other accounts; they had to deal with Lora’s expired passport and driver’s license to get her on the plane to New York.  They also needed to find a memory care facility in New York City, and the list didn’t stop there.  After the move to New York, it eventually became clear that although Lora needed almost constant care, the facility that Jill and Mike found for her was not a good fit.

Caregiving As An Ensemble Show

The solution came when the apartment literally across the hall from Jill and Mike became available and they moved Lora (whom the family calls Lolo) in.  Around the same time both son, Max, and their daughter, Alison, from Mike’s first marriage, found themselves living in New York and helping out with caregiving duties.  Alison, who is a chef and personal caterer, cooks most of Lora’s meals, Max gives his parents some respite by playing companion to his grandmother (when he is not playing drums in his band) and two professional nurses round out the “a la famigla” that Mike had always envisioned as part of their Italian excursions but is actually now playing out in the Big Apple.

Photo courtesy of Kristine Walsh

“We could not have planned it better but going through this experience really brought us together as a family,” says Mike.  Besides the familial ties, Mike believes his gifts from caregiving are that he and Jill have become even closer and that he is now more realistic about his future and how he will want his family to care for him.  Jill told me that she feels caregiving has taught her to “just let things happen and to not be in denial because it doesn’t serve you.”   She also feels it has improved the communication she and Mike have and his support has allowed her to really discover who she was through this experience.

As the “Tuckerberry” family gathered recently for Lora’s 93rd birthday, Jill and Mike have proven successful as both co-stars on screen, in life and in caregiving.  When I think of Jill and Mike, I think of Julia Child’s quote, “…nothing is too much trouble if it turns out the way it should.”

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

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