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.

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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

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.

Sep 192012
 

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

Finding courage

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

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

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

Silence is the enemy

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

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

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

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

Photos by Shannon Power

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.

Jul 032012
 
American Flag

I have faced many battles in my life.  I served in Vietnam as a Marine Corps corporal. I also completed four tours in Iraq in the U.S. Army, and four of my sons served in Iraq, too.  But all my battles have not been while serving in the military.

My mother passed away from Alzheimer’s disease.  I lost my son, Dennis Jr., in a motorcycle accident.  And now, I am facing my own battle with Alzheimer’s disease.

I was preparing for a sixth deployment to Iraq when my Colonel and my wife brought up concerns about changes they were seeing.  I had just received a Secretary Manager of the Year Award, but I was aware that something was wrong.  I had been waking up in the middle of the night realizing there was something I forgot to do — or something I needed to do.  Recognizing my memory was changing, I decided to retire.   Too many people’s lives would be at risk if I went on a last tour in Iraq.

I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I had made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Dennis Henley Sr. with General Franks and son Dennis Henley Jr.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.

It’s also important to realize that a diagnosis isn’t the end of the world.  Truly – it’s not.  You aren’t alone. There are so many people available to help you and so many people committed to finding a cure.  It’s difficult to accept, but easier to do if you are open and honest with those around you.

In fact, I talked until 2 a.m. about my diagnosis with one of my military buddies last week.  I have friends that I went through grade school, high school and the military with, and we have no secrets. We openly talk about this disease.  It’s a source of strength and comfort to have the people around me know what is going on. Alzheimer’s isn’t my fault.  It’s no one’s fault.  And there is no reason to feel guilt over it.  It’s out of my control.

It really helped having an Alzheimer’s Association representative from my local chapter come and explain why things aren’t like they used to be to my family.  I have 11 grandchildren – and they all understand that things aren’t quite the same and the whole family is making adjustments.  But that doesn’t keep us from spending meaningful time together, which is what I plan to do tomorrow on the Fourth of July.

We will all dress in red, white and blue and gather together for a barbeque at my son’s house.  Our flag will be at half mast, and I will remember the battles I have been in and the one I am facing now.  I believe we are here to help others – to leave a legacy.  As I spend time with my family, I know that I have left my mark by raising my family to be good citizens.  And I still have more to give. I will keep on moving forward and not give up.

Dennis Henley is a member of the national Alzheimer’s Association 2012 Early-Stage Advisory Group. He was diagnosed with early-stage Alzheimer’s in 2008. Prior to his retirement, he served in the U.S. military for 26 years, including working in counter intelligence for the Army and as the Chief of Security for the Army Corp of Engineers in Jacksonville, Fla.  Dennis lives in Littlestown, Pa., with his wife, Mary.  

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Jun 152012
 
mother_daughter_noses

Whether your musical tastes run to the 70s television show with the Partridge family singing their theme song, C’mon Get Happy, or the 1950s song that inspired it, Get Happy, made famous by Judy Garland, the message is that happiness is in our hands not something we are handed.

When it comes to caring for a loved one, happiness may not be the first emotion that you would associate with a life role that many find overwhelming, frustrating, exhausting and time-consuming. Yet, as I researched more about happiness and how we go about creating the happy factor in our lives, it was apparent that many of the activities associated with caregiving are actually the principles that experts say will make us happier in our lives.

Following are five principles identified by Dr. Ian K. Smith in his book, Happy   Simple Steps to Get the Most Out of Life. I have taken his principles and added my own caregiving take on these tenets along with some tips on enhancing each of these ideas to create the maximum happiness along your caregiving journey.

1. Be kind, do something nice for someone, volunteer
According to the National Alliance for Caregiving, 75 percent of caregivers feel they had no choice to become a caregiver, the need was there and they were the one to fill the role. Even if you felt you had no choice, you have volunteered for one of life’s most important roles  caring for a loved one. This is one of the kindest, nicest gifts you can give another person. You are paying it forward for your own care later in life.

My tip: Be kind to yourself just like you are kind and caring to your loved one. Take the time to write yourself a thank-you letter for everything you do  the patience, the time, the love you are providing. Take this letter out and read it on days when you feel down or like you cannot go on. Congratulate yourself for the wonderful gift of caring  and the gift of volunteering  that you are giving.

2. Strengthen and deepen personal relationships
We know from numerous studies that isolation is bad for our older loved ones  it impacts both their health (such as not eating properly or enough) and their wellness (sometimes leading to depression). By spending quality time with your loved one, you are helping them achieve better happiness. What will take this up one more notch is to talk to them about days gone by. When I would spend time with my grandpa  he loved to talk about his early childhood growing up in Cleveland and riding the wooden roller coaster at Euclid Beach. Nostalgia and legacies are important to our older loved ones and we can learn a lot we may not have known about our family’s history.

The flip side of this happiness principle is carving out time to strengthen your other relationships. What researchers at Harvard University and the University of California at San Diego found is that our friendships actually can improve our happiness quotient. Their study showed that happiness is like a virus that spreads through social networks  your friends’ happiness and even their friends’ happiness can affect (or infect) you. The happiness of a first degree contact friend increases your happiness by 15 percent!

My tip: Increase your happiness factor  carve out time to grab a coffee or go on a walk with a happy friend and feel your spirit uplifted.

3. Develop a spiritual life – practice forgiveness
When we search for deeper meanings in life, believe in a higher power, or just take the time to understand both our own and other’s limitations, we are on the path to more happiness in our lives. Numerous studies have shown that our spirituality increases as we age. Forgiving your loved one for their behaviors  whether it is their crankiness, their obstinance or their constant needs  is hard for caregivers. Take these trying times and forgive your loved one because in the end they are probably afraid and that often changes our personalities. For your sake, find an expert that can give you techniques on how to cope so you can maintain your happiness level.

My tip: It is important that caregivers find experts: geriatric care managers, a therapist or caregiver support groups can all help you find ways to forgive the person you are caring for and forge new ways to cope when you get frustrated. Caregiving support groups can be a terrific resource on techniques on coping.

4. Spend money on someone else
This is a little tricky because sacrificing your own financial future is a concern I have for caregivers. A National Alliance for Caregiving study showed that one-half of all caregivers spend 10 percent of their annual salary on care-related costs. While you do not want to go bankrupt while caring for your loved one, feeling good about paying for something your loved one needs can be very satisfying and puts a deposit into your happiness account.

My tip: Ensure you talk to your financial planner or accountant about your caregiving responsibilities and especially about what you are spending out of your own pocket so they can help you save your nest egg. It may be that some of these costs can be covered under Medicare or Medicaid or you may even be able to qualify for tax credits if your loved one depends solely on you and other criteria you must meet to claim them as a dependent.

5. Be hopeful (the glass half full form of optimism)
The Mayo Clinic actually did a study tracking participants over a 30-year period and found that the optimists had a 19 percent higher chance of still being alive and that they suffered less from depression. Other studies have shown that optimistic people have less chronic stress because they view setbacks as minor incidents that can be overcome. We know chronic stress is the number one factor that causes caregivers to develop chronic illness at twice the rate as the general public according to a study by the Commonwealth Fund.

My tip: One of the characteristics of an optimist is the power of their smile  remember how good you feel when someone smiles at you? You inevitably smile back and for a few seconds all seems right with the world. Even though you may be blue or having one of those days  try smiling. It is hard to be mad or sad when you have a smile on your face.  Sonja Lyubomirsky, a researcher at the University of California at Riverside and who has long studied the health impacts of smiling, finds that people tend to mirror each other. Smiling is truly infectious  it catches on faster than the flu. You will be amazed how happy you are when you just smile.

Charles Schultz, cartoonist and creator of the Peanuts comic strip said “Happiness is a warm puppy and a side of French fries.” I am smiling as I write this (because I agree with him) and I hope you are smiling as you read it. Caregiving can be many things and maybe it can even make you happier.

©2012 Sherri Snelling

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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.

 

Mar 092012
 
woman

This post originally appeared on the ChicagoNow blog, “Ask Dr. Chill: Practical Answers to the Toughest Caregiving Questions.” It is being reposted here with the author’s permission.

Almost eight years at the Alzheimer’s Association — five at the Utah Chapter and close to three at the National Office right here in Chicago — left equally enduring imprints on my mind and heart. The mental imprint is analytical, bridging science and people in the shape of a fervent belief that a cure is inevitable.

The imprint on my heart is much different. It’s in the form of my own grandmother, who died of complications from Alzheimer’s disease and vascular dementia at the age of 89. It’s a delicate imprint, and it still hurts sometimes, even though she died more than 20 years ago. I see her face in almost every person I meet who has the disease.

It is because of these imprints that I took great interest in the Alzheimer’s Association’s recent release of its 2012 Alzheimer’s Disease Facts and Figures Report. This compendium of facts is impressive and startling. For a very cool visual summary of the toll that Alzheimer’s disease takes on individuals, caregivers, families, and the health care system, check out this 2-minute video marking the report’s release:

It gave Dr. Chill the chills…and some tears. According to the report, there are more than 15 million caregivers in the United States caring for someone with Alzheimer’s or a related dementia. In 2011, they provided over 17 billion hours of care valued at more than $210 billion.

But here’s the thing that really disturbs me. Caregivers don’t only care for people with Alzheimer’s disease and other dementias. There are caregivers for people with cancer, diabetes, heart disease, lung disease and those who had a stroke among other health complications. Some of you reading this blog may be caring for someone with a developmental or physical disability. Others might be taking care of someone who is simply having trouble maintaining independence due to the normal course of aging.

The numbers in the Alzheimer’s Association’s report are stunning, but they paint just one swath of the caregiver landscape. I started to wonder how much of the landscape remained. Some digging turned up a 2009 report—the most recent I could find that provides general numbers — compiled by the National Alliance for Caregiving and AARP. Caregiving in the US states there are 65.7 million caregivers in the United States caring for someone who is aged, disabled, and/or ill. Now that’s really stunning.

Remember that mental imprint I described? The analytical, more objective one. When I hear these kinds of numbers, my mind turns toward concepts of magnitude, awareness, research, the badly mired health care system, graphs, charts, grant proposals, and yes, cool videos that send shivers down my spine. In other words, I see the big picture.

But if you recall that other, more subjective imprint inside me — the one on my heart — I see a different vision. Try to imagine these massive numbers melting together into an indecipherable glob of hurt. What I see is one caregiver, one that represents the hundreds I’ve known over the years. She is tired, distraught, scared and doesn’t know where to turn for help. She feels incredibly alone. Yet she is not alone. As we’ve learned, she is literally in the company of millions.

It’s a bittersweet reality.

About Guest Blog Author Carrie Steckl, Ph.D.

Carrie Steckl, Ph.D. is a freelance writer specializing in caregiving, psychology, and aging. Her blog, “Ask Dr. Chill,” provides practical answers to the toughest caregiving questions.

 

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