Oct 302014
 

In April 2013, Vern Gillmore was diagnosed with early-stage Alzheimer’s disease. When Vern first started to experience the warning signs, he was not prepared to hear the words “Alzheimer’s disease.” Today Vern and his wife and care partner Karen are working together to educate others about the disease while facing their daily challenges head-on. They are just one couple whose story shows the power of love and teamwork during National Alzheimer’s Disease Awareness Month.vk1

In Vern’s Words

I have been athletic all my life. I couldn’t accept not having a healthy body. I’ve always prided myself on physical fitness and staying in good health, and suddenly I had anxiety and double vision and difficulty using familiar devices like the home computer.

I was a volunteer in disaster response, and when you work in those situations, you have to be able to make quick decisions. I volunteered during Hurricane Sandy in New York and realized when I returned home that I wasn’t as quick or alert as I should have been. I didn’t want to hurt people who were suffering by making a bad decision – that would have torn my heart out. I realized something was wrong with me. My mother and brother had Alzheimer’s, but I was in denial that the cause of my symptoms could be the same.

I have accepted that I have Alzheimer’s. I handle my frustrations by keeping busy. I love taking my dog outside, running her hard for an hour and see her enjoy the exercise as much as I do. Her happy wagging tail makes me happy.

At first I didn’t want to share my diagnosis with others.  I was embarrassed and ashamed. But then I realized that I didn’t do anything wrong to cause this diagnosis. Things have changed since my diagnosis. I now look forward to being able to talk openly about my Alzheimer’s. I now speak at churches, city centers and hospitals in my area because I know that many people are uninformed and that the general population needs to understand and learn more about Alzheimer’s disease.

My wife Karen is my care partner. She is observant and sharp. She doesn’t miss a beat.  She is why I was able to get back to what matters: I volunteer, participate in the Walk to End Alzheimer’s, and stay involved in whatever capacity I can.

In Karen’s Words

Vern and I met through a newspaper advertisement in the San Francisco Chronicle during the ’90s. We were married for 20 years before the Alzheimer’s diagnosis.

I am the worrier in the family, vigilant 24/7. On a typical day, I manage our schedules and instill safe habits. Vern sets up his medications and I double-check them. I ask him the important questions before he goes out: do you have your wallet? Keys? Phone? GPS? We keep a list of phone numbers available should he become confused or need help when he goes out.

I have found the Alzheimer’s Association website alz.org to be a gold mine. It is simple – there is so much information on Alzheimer’s disease and it’s easy to read and understand. I chip away at the website, read books, and subscribe to neurology journals.

I think it is important for care partners and caregivers to know that it doesn’t make you a bad person when you experience frustrations. One of the biggest challenges I have come across is the changed communication style between Vern and I. It takes a lot of energy and never-ending patience to not take things he says or does personally.

When we went to a support group, it was the first time I didn’t feel all alone anymore. Everything I had been thinking and feeling was validated. Other people were experiencing the same emotions I was. I talked to people who were at the same place I was as a care partner and it gave me a renewed sense of energy.

Vern has renewed energy as well; he is now very interested in educating people about the disease as an Alzheimer’s Association National Early-Stage Advisor. He never really had a hobby other than running, and volunteering; but he has one now. His hobby remains volunteering, but he has added talking about Alzheimer’s and educating the public about how this disease impacts individuals and families.vk2

Vern and Karen’s story continues. And they are not alone.

In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. More than 60 percent of those Alzheimer’s and dementia caregivers and care partners are women. Karen is just one of millions who found resources that have helped her on her journey as a care partner.

Vern Gillmore is a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG) and is actively involved with the Utah Chapter of the Alzheimer’s Association. As an Advisor, Vern shares his story to raise awareness about Alzheimer’s and help reduce the stigma attached to the disease.

 

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Feb 212014
 
wanda_young

Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of  treatments and possibly future cures for Alzheimer’s and other dementias.

TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a database of 130+ Alzheimer’s clinical trials, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted across the country, TrialMatch is a unique opportunity to make a difference in your life and the life of others with Alzheimer’s disease.

The Alzheimer’s Association spoke with TrialMatch user Wanda Young regarding the benefits of her participation in these clinical studies. Wanda is caregiver for her husband, mother and brother, all of which have forms of dementia.  She is participating in clinical trials as a healthy volunteer.

Wanda initially called the Alzheimer’s Association to receive information about brain donation and was told about TrialMatch. “I Cwas interested in the opportunity because I wanted to learn; I’m always trying to learn more. I’m actually taking a psychology course right now, studying the brain. My kids think I’m a bit of a geek, always trying to absorb the most I can about a subject… Education is the key to everything.”

“TrialMatch allowed me to plan my days as a caregiver better. It helped me take a look at myself and how I was coping, and how I could better care for my loved ones. TrialMatch prepared me for what to expect and how to respond as my family members progress with their various dementias. The TrialMatch experiences allow me to think further beyond today and into the future.”

Wanda says that she saw the TrialMatch process not only as an outlet, but as a helpful planning tool that allowed her to plan major life decisions. “My time at the computer is my time alone and my time away from everything else I am experiencing. Using the computer on my own schedule is an easy way to receive new information. The studies I participated in helped me write my advance directive and allowed me to look at my own life and health. I also received tips for managing the medications of my family members, as well as helpful information about daily toiletry, tactful ways to redirect, travel to doctor appointments and so many helpful resources for each of them (my husband, mother and now my brother.) These are not easy tasks. They take time to complete, and only someone in my situation knows what it is like.”

Whether you are a caregiver, someone with Alzheimer’s or other form of dementia, or even a loved one of a caregiver or person with dementia, you are needed for future research. “I wish more physicians knew about TrialMatch and could tell their patients and their families about it. I used to have my own business; needless to say, my life is very different from what it used to be. Caregiving takes a major hit on your self-esteem. As a caregiver, I have gained a lot of weight due to the stressors in my life.  Without a support group or outside help, you can begin to feel like a non-entity, like you don’t exist. Thankfully I have been able to join a support group and have participated in groups at the Alzheimer’s Association to help with these feelings.”

Wanda recognizes that the more that she learns, the more she can change her life and the lives of others. TrialMatch educates caregivers and offers researchers valuable information only caregivers and those with Alzheimer’s  and other dementias can provide. “I believe I have become an advocate,” Wanda says. “I read, I experience, I learn, and I take what I know back to the nursing home to help those in need. I share what I have learned with the staff, other caregivers, the residents and their family members. You don’t feel so far-removed from researchers when you are able to participate in a trial. I felt as though someone heard me, and that in itself is empowering. TrialMatch has been a way to de-stress. Being a caregiver is a full-time job. People don’t realize how difficult it is. It is important that caregivers have a voice.  I thank TrialMatch for giving me this platform.”

Ultimately, the goal is always the same. “The TrialMatch studies help caregivers cope with the difficult task of taking care of our loved ones. You feel less alone, and more educated. You feel like someone cares – and understands. Ultimately, the reason anyone should participate is to get us closer to a cure. The goal is always to find a cure.”

 

Wanda Young has been married to her husband Lou, a former teacher, mentor and coach for nearly 30 years. They have two wonderful sons. Wanda participated in the Medications Assistance study and the Relationship between Chronic Stressors and Eating Behaviors in Dementia Family Caregivers study through the Alzheimer’s Association’s TrialMatch® program. She is the primary caregiver for her husband, her mother and her brother.FOTFE12_A

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Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Nov 252013
 

When it comes to caring fwoman sleeps on the sofaor a parent, spouse or other loved one, sleep is not for beauty. It is essential to maintain health and the energy needed to be a caregiver. Uninterrupted, restorative sleep (7 to 9 hours) is recommended by most experts.

But for many of the nation’s 65 million family caregivers, sleep is an elusive luxury.  In fact, a National Alliance for Caregiving (NAC) study on caregiver health risks found 87 percent of those caregivers surveyed suffered from insomnia.

If you suffer from insomnia or sleep deprivation, you are at risk for numerous health issues. According to the National Sleep Foundation (NSF), more than 50 percent of people older than age 65 suffer sleep disorders that ultimately shorten their lives. This deprivation of sleep is called sleep debt. In an interview with WebMD, Susan Zafarlotfi, Ph.D., clinical director of the Institute for Sleep and Wake Disorders at Hackensack University Medical Center in New Jersey, said, “Sleep debt is like credit card debt. If you keep accumulating credit card debt, you will pay high interest rates or your account will be shut down until you pay it all off. If you accumulate too much sleep debt, your body will crash.”

Insomnia typically is a function of not being able to relax our minds and our bodies. To get some sleep, try these tips from Dr. Lawrence J. Epstein, associate physician, Division of Sleep Medicine at Harvard University:

1. Create a sleep-inducing environment: a dark, quiet, comfortable and cool room.

2. Do not use your bedroom for anything other than sleep or sex. No television, no laptops.

3. Make sure you do not eat at least two to three hours before bedtime, and avoid caffeine or alcohol close to bedtime. Note that smoking can cause trouble sleeping.

4. If you are tossing and turning at night and you cannot get those eyes closed, try drinking green or chamomile tea before bed or put a lavender pillow near your head to aid relaxation.

5. Create consistent sleep and wake schedules, even on weekends. Our bodies have internal clocks called circadian rhythms that synchronize our active and rest states with biochemical reactions in our bodies. Circadian rhythms are based on light/dark cycles, with light having the most impact on our ability to get to and stay in restorative sleep.

For caregivers, it is time to awaken to the fact that sleep may be your best medicine.  Sleep well.

Excerpted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling (Balboa Press).

 

About the Author 

Sherri Snelling, CEO and founder of the Caregiving Club and author of “A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care,” 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.

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Nov 142013
 

lehmann

Next month, Mary Margaret and I will have been together 50 years.

She is a very positive gal, extremely caring and inclusive with her friends. I am not always a social animal. Mary, however, is very outgoing and makes new friends easily. These days, we are attached at the hip… but it wasn’t always this way.

In 2009, I was diagnosed with Alzheimer’s.

After I received the diagnosis our lives changed. At the time, Mary Margaret and I were living in California, but this news caused a great sense of stress, so we relocated to Minnesota to be closer to family. Moving wasn’t difficult – it actually took a weight off our shoulders. Then one of my wife’s friends said “Why don’t you call the Alzheimer’s Association’s 24-hour helpline?” That really changed our lives. Not only have I become very involved in the Association, but so has Mary. During our career years, we really did very little together – now we do everything together. Our connection to the Alzheimer’s Association and shared commitment to raising awareness of the disease has brought us closer together as a couple.

Before I received the diagnosis, Mary and I were absorbed in our separate professional lives: She had her activities, and I had mine. If we got together on a Sunday, it was a big deal. It’s almost like we are dating all over again. She has turned me on to subjects I wouldn’t normally be interested in, and we have immersed ourselves in an eclectic series of programs. She is an avid reader and I’m not; however, through themed book presentations I have been able to learn something new with Mary, and that was a different experience for me. In turn, I have turned Mary on to the arts and now we are both passionate about visiting museums. There isn’t a local museum we haven’t been to!

We support each other.  The experience for caregivers and care partners is unique to the relationship. Mary and I support each other on a daily basis; we have to. She is the social contact, the “hostess with the mostess”, and I am her assistant, you might say, helping in the ways I can. I’m not a terribly patient person, so I am trying to be more patient, which is the least I can do.

The biggest thing that I notice is her relationship with other caregivers. I have a deep respect for the sacrifices that caregivers make every day to support individuals like me who are living with the disease. Today, there are more than 15 million unpaid caregivers of people with Alzheimer’s and other dementias in the United States. The role is demanding; they are our lifeblood.

Mary Margaret’s compassion extends beyond our relationship. She spends much of her free time talking with other caregivers; learning from others and offering support. She has hundreds of followers from all over the U.S. on Twitter, and she will refer articles to them to get feedback and exchange ideas. Compassion is in her genes! During National Caregiver Month, I want Mary Margaret and other caregivers to know that I am grateful. THANK YOU!

What makes a caregiver in your life special? Leave a comment here on the blog, or leave a tribute for a caregiver or care partner at the Caregiver Center.

About the blog authorKen Lehmann is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG), and he pays tribute to his wife and very special care partner Mary Margaret during National Alzheimer’s Disease Awareness Month. As an Advisor, Ken encourages others living with the disease to avoid worrying about the past, but to “live in the moment.” 

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Dec 032012
 

In the summer of 2011, my sister Gina and I held the distinction of having two parents in the hospital at the same time. On top of that, they were in different hospitals; one hour apart. I was drawn to our mother, and my sister was pulled to our Dad. We didn’t pressure each other. Our natural abilities paired with what each parent needed at the time.

Gina is a doctor in teacher’s clothing. She can read hospital monitors and converse with doctors as if she is their colleague.

That’s what my father needed as he suffered with lung cancer. My mother needed an emotional touchstone, while doctors ran test after test to determine whether she’d had a minor stroke and the extent of her dementia.

That would’ve been all well and good if I wasn’t also a mother of four, a wife, an adjunct professor, professional actress, small business owner, and writer who occasionally likes to sleep. (My list is no longer than most people these days.)

To be there for my Mother I had to borrow from all of those areas at a cost. When I was with her, I felt guilt for not tending to my other roles and vice versa.

This wasn’t going to be temporary, either. After her one week hospital stay, we transferred her to a nursing home with a dementia unit. She would not return to the home she’d lived in for forty-six years.

Embracing the role of caregiver

I felt responsible for my mother’s well-being, as if she were one of my children. It wasn’t until I embraced that notion that I found a way to manage the responsibility.

Attention given to mommy wasn’t “taking from” — it was “a part of” being a caretaker to my whole family. My heart was already open to taking care of Mommy. Embracing her as a dependent enabled me to open up my life and see a bigger picture.

Also, it didn’t take away from my Mother’s dignity, grace or everything she’d accomplished in her life that she needed my care. Circumstance had converted our relationship. I needed to let go of being “the child.” That label no longer applied, and I had to make a mental shift in my thinking to move forward.

I suppose I could have left my Mother’s care to the nursing home but the magnetic pull was always there.

The adoption of another dependent was the best way for me to take on my role as caregiver. A role that chose me but I was honored to play.

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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.

2013 ALTY Blog Award Nominee

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.

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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