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.  

Learn More:

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

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.

 

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.

 

Jan 132012
 
Caregiver Mondays

Answer: One Resolution for Caregivers –52 Chances to Make It Work

Ahh the New Year is here – the hectic pace of the holidays is over, the frenzy over buying gifts and seeing  friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – that moment to put the world on “pause” and get a break never seems to happen.

When it comes to caring for an older parent, a chronically ill spouse or a child with special needs, we know that caregivers are at risk for adopting bad habits such as smoking or drinking, for not getting enough sleep, for not having the time to eat or exercise right and for not taking enough time to focus on themselves – whether it is a coffee date with a friend, a pedicure, a movie or other things that can bring a smile to our face.

This is why my wish for all caregivers this year is to make a promise to yourself that you can keep.  Make it simple.  Make it just about you.  Here are some tips on how to get there:

3 Steps to Keep That Promise to Yourself

1.       First of all, you need to have an actual plan. If you just have a desire to improve something, it is not enough.   You will be more successful at achieving your goal if you have steps on how to get there.  For instance, it is not about losing weight – it is about the changes you will take to reach that goal.  Breaking a big goal into small increments is a key part of your plan.

2.       In addition, you need to track your progress.  This instills a sense of mini accomplishments on the path to your goal.  It helps to talk to someone who is invested in seeing you be successful.  Having a friend or other support person who can be your “cheerleader” – celebrating your milestones towards the goal can help keep you going.

3.       Lastly, be committed to your goal.   Keep it simple (one resolution is better than two or three) and treat occasional “slips” as temporary setbacks on the path to reaching your goal.  You have to commit to change.   This is a marathon not a sprint.  Be kind to yourself if you have a bad day that makes you reach for the chocolate.  Remember the words of Scarlett O’Hara, “Tomorrow is another day.”  Start fresh the next day after a lapse.

My Answer:  Me Time MondaySM

I had the luck of meeting with a non-profit organization that I thought had a brilliant idea.  It is called Healthy Monday – based on scientific research and the support of prestigious institutions such as Johns Hopkins University, Syracuse University and Columbia University, they have found that starting a new routine on a Monday will make you more successful at whatever you want to achieve.  Essentially the premise is simple – just as the New Year is a time when we resolve to do something, every Monday is an opportunity to renew that promise to ourselves.

Healthy Monday says their research shows that most Americans feel Monday is the day for a fresh start.  It is part of our cultural DNA – Monday is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend respite.

For caregivers, I believe using the Monday point in time to remind you of “what have I done for me lately?” would make sense.  Whether it is 5 minutes or 5 hours – it does not matter.  Check in with yourself every Monday and take time for you.

I was thrilled when Healthy Monday created a specific Caregivers’ Monday campaign.  They are part of a national movement to get our society focused on the value of family caregivers and the need to help caregivers stay healthy themselves.

Fifty-two weeks to reach your goal.  Pick one thing that you would like to accomplish just for you this year.  Check in with yourself every Monday.  And, tell me what your “Me Time” tip is – I will include it in future videos and blogs.  Good luck – 2012 is your year!

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.

May 092011
 

I hate Bingo.

There, I said it. That popular activity which people of all ages enjoy at local fire halls, senior living communities and kindergarten classrooms across the country is one of my least favorite ways to pass the time.

As a former assisted living activities director, I can tell you that — in my book — the only thing worse than playing Bingo is calling Bingo. Round and round the cage would spin, as I strained to keep my eyes open so that I might read aloud each numbered/lettered ball that rolled down the ramp. (I’m sure it didn’t help that Bingo was usually scheduled at the peak of the midday slump, around 3 p.m.)

Yes, I enjoyed seeing the residents get excited about winning, or fighting about what constitutes postage stamp Bingo, but as I recall, many of them looked as bored as I was.

Here’s the thing: If you didn’t enjoy Bingo when you were a kid, you probably won’t enjoy it as an adult.

Besides, there are so many other fascinating hobbies and engaging activities that it just doesn’t seem fair to resort to Bingo all the time. Yet I would venture to guess that if you were to compare activity calendars for five assisted living facilities in your town, they would all list Bingo at least once.

And what does Bingo have to do with Alzheimer’s, you ask?

Bingo is an activity. Love it or hate it, it’s an activity that some people enjoy whether they have Alzheimer’s or not.  True, Alzheimer’s may limit full enjoyment of the game, but just because a person is diagnosed with Alzheimer’s doesn’t automatically negate all previous interests.

And in the case of interests, hobbies and activity preferences, an Alzheimer’s diagnosis means nothing.

Unfortunately, too many family/professional caregivers feel that an Alzheimer’s diagnosis means everything when it comes to activities, but it doesn’t. Certainly the way the afflicted individuals engage in these activities may change for any number of reasons (medication side effects, lack of sleep, difficulty with language or motor skills, etc.), but the person in your care has not lost all of his or her history or identity. If your Mom enjoyed gardening all her life, why would a diagnosis change that? If Granddad loved watching the World Series and has fond memories of doing so every year since the age of 5, why should he stop?

Alzheimer’s Is About Adaptation

Those living with cognitive impairments — and their caregivers — are constantly adapting to the changes wrought by the disease. Sometimes, those adaptations are subtly applied and integrated into the daily routine; other times, a drastic adjustment is required of both parties. Nevertheless, adaptation is a regular, recurring part of a life with Alzheimer’s.

When planning for and providing meaningful, stimulating activities for those with Alzheimer’s and related dementias, consult the individual’s personal history for clues about favorite pastimes, and use these as the foundation for program/daily routine design. If and when it is necessary, adapt these activities to fit within the framework of the individual’s abilities. Maybe your mom loves to hike but the risk of wandering is too great. Figure out a way that allows her to hike safely without feeling like she’s a child who can’t be trusted. Find a respectful balance that promotes independence while ensuring her well-being.

If your brother enjoys taking beautiful photographs of the birds that come to his backyard feeders, there is no need to let the Alzheimer’s diagnosis take that away too. You may need to help him develop film, you may not. You may need to remind him where the camera is stored when not in use, you may not. Don’t change a thing unless you have to.

Unfortunately, this method is not 100 percent foolproof. Sometimes, the whims of Alzheimer’s disease prevail, wreaking havoc on an individual’s personality/mood, which might mean they lose interest in things that they had enjoyed previously. If the safety of the individual is at risk by participating in certain hobbies or routines, you may need to discontinue or alter them accordingly. My grandfather, an expert woodworker, was bedbound as a result of his Alzheimer’s, so getting him down to tinker in his workshop was not an option. In other cases, the person can be so depressed about their inabilities that they are paralyzed with frustration when they cannot do what they did so easily before. Be sensitive to this possibility, and don’t push your loved one — or yourself — to continue in a particular hobby if it only brings agitation.

Resources for Activity Planning

There are a wealth of articles and resources out there about meaningful, stimulating activity ideas for those with Alzheimer’s/related dementias. Some are better than others, but if you ask me, it all comes to back this idea of identity, to the fact that the person in your care is still an avid reader, classical music lover, golf aficionado, etc. despite the devastating diagnosis.

Storytelling/journaling, art therapy, pet therapy, intergenerational programs, reminiscing, household chores, baking, gardening, music, dancing, exercise, photography — the list goes on.

Explore the possibilities at these links if you’re at a loss, but only after you’ve asked the person in your care what they would like to do first:

1. Activities for People with Alzheimer’s

2. 101 Activities for Kids To Do with a Loved One with Alzheimer’s

3. 50 Activity Ideas for Someone with Alzheimer’s

4. Adapting Activities for People with Alzheimer’s

5. Activities for People with Alzheimer’s from AARP

What I would offer is this: Alzheimer’s has already complicated things in your life. Don’t make activity planning harder than it has to be. Adapt the activities that you/the person with Alzheimer’s has always enjoyed, and go from there. If you follow this rule-of-thumb, you have, by default, selected an activity that is both meaningful and stimulating, and the simple act of providing this activity can be a real source of comfort (to all parties involved) in the chaos that is Alzheimer’s disease.

Today’s guest post comes from SeniorsforLiving.com’s Michelle Seitzer. Before becoming a full-time freelance writer, Michelle spent 10 years in the senior living and advocacy world, serving in various roles at assisted living communities throughout Pennsylvania and Maryland, and leading the charge against Alzheimer’s as a public policy coordinator for the Pennsylvania chapters of the Alzheimer’s Association. She has blogged for SeniorsforLiving.com since November 2008 and currently resides in York, Pennsylvania, with her teacher husband and two Boston Terriers.

Alz.org main site  |  Research  |  Advocacy  |  Care and support  |  Message boards  |  Disclaimer  |  Donate  |  Contact us  |  Sign up for e-news
© 2011 Alzheimer's Association | Blog Suffusion theme by Sayontan Sinha