May 172013
 

Tania and her mother This past holiday season, I had the pleasure of appearing as Mrs. Cratchit in “A Christmas Carol” at The Goodman Theatre.

On several occasions I thought how much my mother would have loved to see me in it. Before I met my husband, my mother was my biggest fan.

When I say my mother would have loved to see the show, I mean the mother who raised me and was always there for me in my young adult life — the mother I knew up until 2008.

That mother saw me every night when I had the lead in my high school production of “Mame.” The box office people knew her by name and on nights when tickets sold out, they let her stand in the back and watch.

Mom always said, “Tania, you have such presence on stage.”

Whether I was performing on Broadway or a storefront theater, my mother was in attendance and always sang my praises.

I am describing my mother before Alzheimer’s.

In 2008 she started slipping away, calling me less and less, repeating herself more and more, forgetting birthdays and asking strange questions like, “What day is Thanksgiving, Tania?” From then on, a different mother emerged.

She was still loving but unable to be there for me because her memory was fading. For instance, she couldn’t remember that I was pregnant with my second child and wasn’t at the delivery like she was with my oldest. She had no idea what was happening in the world. She never asked about my children or husband.  She didn’t know where I lived. She had no idea I was a professional actress.

Mom was a doctor who never left the house without looking her best. She always wore dresses.  She went to the hairdresser every week for a wash and set. She was private to a fault.

In the nursing home she wore pants, let the caregivers braid her hair in cornrows, and shared a room with two other patients.

I suspect that she’d be mortified by the woman she had become, and I had to make peace with that. I didn’t love her any less when she lived in the nursing home. She was her purest self. The essence of my mother — sweet, good, funny, kind and loving — remained.

Photo by  Liz Lauren: A Christmas Carol

Photo by Liz Lauren: “A Christmas Carol”

It stings that she didn’t see me play Mrs. Cratchit; and it pains me that—even if she was still alive—she couldn’t have attended.  She wouldn’t have been comfortable leaving the nursing home, getting in a car or sitting in a dark theatre surrounded by people. I don’t think she would have even understood it was me on the stage.

Alzheimer’s splits a person in two; their life divides into who they were before and who they are afterwards.

I grieve my Mom twice, mourning two spirits but lucky for having known both.

About the Blog Author:
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.

Learn More:

Grief & Loss as Alzheimer’s Progresses
Caregiver Center
Support Groups
Online Community

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.

 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.

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.

Learn More:

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 212012
 

 A Note from Michael: I would love to thank each one of you for the wonderful comments I received from my article.  As an advocate, it can be challenging to measure the ways in which my story is received by others. Seeing all of this positive feedback has given me a boost to continue writing and raising awareness for the millions of American’s affected by Alzheimer’s disease.

Since receiving my diagnosis, I have had the opportunity to speak with many individuals living with Alzheimer’s and other dementia.  I hope that my personal story has given others a new perspective on how to live with this disease, and connect with others.  Don’t give up! It takes time and patience to find the right connections and the best ways to cope with some of the challenges you may experience; however, the benefits are priceless. I am grateful for the opportunity to connect with so many of you through this blog. The acknowledgements and comments I received have inspired me to continue advocating as a person living with Alzheimer’s. Please join me and become an Alzheimer’s advocate. Join the National Alzheimer’s Advocate Network and make your voice heard. Thank you again.

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Alzheimer’s disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact is that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer’s and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer’s disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer’s advocate and a spokesperson for the Alzheimer’s Association (US) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don’t want them to feel sorry for me or pity me, I just want to be understood. So many people say you do not seem to have Alzheimer’s, and that frustrates me. Let me tell you what it’s like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer’s and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see them clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don’t understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don’t put them away, because I don’t know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say ‘if I can do anything just let me know.’ If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that  I am doing all these things wrong and have no way to control or stop it, and it’s only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I have lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make things worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage.  That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they knew what Alzheimer’s is, but they don’t. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voice be heard. We did nothing and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with the existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer’s Plan. I did all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I am now a volunteer for the national Alzheimer’s Association Early-Stage Advisory Group.  If there is something I want you to walk away with it’s that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it’s just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer’s Association that can help you. The Alzheimer’s Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple on Friday, Sept. 21 for World Alzheimer’s Month. I wear a purple Alzheimer’s bracelet every day.  And for those living with Alzheimer’s, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of.  I, and your loved ones, are counting on all of you.

Learn More:

About the Blog Author: Michael Ellenbogen is living with Alzheimer’s and trying to make a difference. Michael is also a member the Alzheimer’s Association 2012 National Early-Stage Advisory Group.

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!

Learn More:

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.

Learn More:

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
 
Shirley is a full-time Alzheimer's caregiver

We spoke with Shirley Sillman, wife and caregiver of Bob Sillman, who was diagnosed with younger-onset Alzheimer’s in 2007.

Have you noticed stigma or jokes about Alzheimer’s in pop culture?

Of course.  But we (society) tend to mask our fears and misunderstanding though humor.  I do it every day.  If I didn’t joke or laugh about it — especially with Bob — I would probably be a wreck.  Do jokes marginalize and ultimately stigmatize the disease?  My view of the world these days is pretty selective, considering caregiving is a full-time job.  I haven’t noticed that pop culture has had the chance to really address this disease, I think because of how misunderstood it is.

Were you surprised by the stigma associated with Alzheimer’s?

With all of the information at our finger tips these days,  it surprises me more when I see the blank look of people who don’t know what to say or do when they learn Bob’s has Alzheimer’s.  I often wonder if people are more uncomfortable with themselves than with the disease.  On one hand, leprosy can be held up as an example of a disease which holds the ultimate social stigma society can offer.  The condition is terrible, and even in the absence of actually encountering someone with leprosy, we’re all conditioned that those afflicted are outcasts and should be avoided at all cost.  Alzheimer’s, on the other hand, invokes a very honest insight into what people know about the disease (and importantly, how to react to someone with this disease).   Where is the collective conditioning that you find with leprosy (or any other disfiguring, immediately degenerative disease)?  It’s not there.  Nobody has really explained to us how to act and cope with this one.

How did you deal with the stigma?

I can only answer this as it relates to my own circle of friends and family. I deal with it as directly as possible.  In the case of family, friends and neighbors, the best approach has been to educate them early on and as much as possible.  Not unlike the shock you see after an accident or catastrophic event, people need (in some cases want) to be instructed what to do.  I believe laying down all of the facts and telling friends, family and strangers how they can help Bob is crucial. In the absence of understanding is fear and uncertainty.  It’s really easy to look away when you can’t identify with and understand what you don’t know.

What advice would you give other families dealing with stigma associated with Alzheimer’s?

Don’t let it spread in your social circle — your family, friends and neighbors.  You cannot (and should never) force anyone to cope with what they are unwilling to handle, but certainly know your facts about the disease and educate those closest to you. You can hope that some of what you impart and share with them will make it to another set of ears that may have a desire to learn more.  That’s how ignorance is overcome: one person at a time.  Ask people 30 years ago about the symptoms of heart disease and compare those answers to what people know now, and I’ll bet you’ll find that all of that public education about heart disease has paid off.

What would you say to the people who believe the stigma surrounding Alzheimer’s?

This is a tough one. Because until people are directly impacted and affected by what they fear (or do not understand), it is unlikely that they will change their mind or perception about the disease.

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Shirley and Bob Sillman Sillman live in Oklahoma where they are very active with their local Alzheimer’s Association chapter. Bob was recently featured in a Walk to End Alzheimer’s television ad. Their team, Forget Us Not, has raised nearly $5,000 to support Alzheimer’s research, programs and care. To find a Walk to End Alzheimer’s in your area, click here

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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