“Getting It” about Getting Social!

Today, I’d like to take just a moment to talk about the importance of social media with regards to what we do here at the Alzheimer’s Association.

I’m sure by now you’ve all seen something about the Ice Bucket Challenge – on your Facebook pages, YouTube, favorite morning TV show, a blog site – somewhere. And you may have even seen it hundreds of times and are sick of hearing about it. (Sorry!) I mention it here only as a reminder that social media in this day and age, can be a powerful tool for spreading awareness, raising money and advocating for change.

I am not here to implore you all to create a viral-video challenge for Alzheimer’s (though, by all means, feel free to do so!). But I am here to remind you that what you share on your own Social Media networks can make a BIG difference in a variety of ways:

  • It can lead someone to call our Helpline, who may not have otherwise known about it or felt comfortable reaching out for assistance (800-272-3900).
  • It can help normalize the experience of caregiving or being diagnosed with dementia and the multitude of feelings that go along with that. Both receiving a diagnosis of dementia and caring for someone with dementia can be extremely isolating. Knowing that others are going through the same things – even on a virtual level – can be very helpful.
  • It can help reduce the stigma around dementia and Alzheimer’s through open discussion and education about the disease.
  • It can help direct others to tools – like educational tools about the disease process, caregiving tools and local resources.
  • It can help with Advocacy – the more people who raise their voice – physically or virtually – the louder that voice is. Legislators listen to loud and unified voices. As you probably already know, the number of people that are affected by a diagnosis of dementia is staggering – and so should the number of raised voices be.
  • And of course, it can help with fundraising. As a social worker, I am naturally inclined to shy away from asking people for money. But it’s much easier when I think of all of the families and individuals we serve who need resources, who need assistance and above all – who need a CURE. It’s not rocket science – the more people who know about us and our events and donation opportunities, the more money we can raise for research and resources.

To summarize – thank you for all that you’re doing out there – as a blogger, a caregiver, a reader and a person. If you CAN do one more thing – please share us with others. Tell others about the Alzheimer’s Association – in person or virtually. If we blog something you like – share it! If we Facebook/Pinterest/Youtube something that resonates with you – share it!  Share it and know that it does make a difference.

Here are some ways to follow, share and stay in touch (with the Georgia Chapter):

 

Facebook: http://facebook.com/alzga

   Pinterest: http://pinterest.com/ALZGA

  Twitter: http://twitter.com/AlzGa

  YouTube: https://www.youtube.com/GeorgiaAlzheimers

  On the Web: www.alz.org/georgia

 

Thank you for Sharing!

Thank you for Sharing! – Kara

“A Life Stolen” – One Caregiver’s Story

     DaddyandMeA    

My father joined the Air Force in 1950 during the Korean War where he trained as an airplane mechanic. After his tour of duty, he returned to his home in Miami and married my mother after only three months of courtship. He worked during the day and attended barber school at night, where he acquired the training to eventually own his first two barber shops. Years later, our family moved to Pensacola where my father would come to own his third barber shop. My parents later retired and moved to Georgia for the sole purpose of spending more time with their children and grandchildren. Although my dad enjoyed doing yard work and watching sports, he mostly loved spending time with his family. He was the most loving and compassionate person I’ve ever known, gladly giving you the shirt off his back if necessary. His generosity knew no bounds.

I noticed minor, even subtle changes with his cognition at first; hiding personal objects, forgetting to pay bills, losing the ability to fix things which he had operated his entire adult life. In time, the changes grew more serious: he no longer felt comfortable driving alone for fear of getting lost; his overall mood fell prey to serious depression; in the evenings his anxiety caused extreme agitation at home. Medical problems also occurred, requiring three procedures, including triple bypass surgery, all within two months. My father started falling during the night and was hospitalized multiple times. I watched as his condition rapidly worsened every day.

As his primary caregiver, I found myself thrust into a world about which I knew very little: the world of dementia. I felt bewildered and alone, the incredible weight on my shoulders almost too much to bear. I never truly knew what to expect from day to day. I didn’t always do the right thing or say the correct words; and looking back, I may not have always made the right decisions. Clearly, I was in over my head, but my choices were few and far between. I was a daughter that woke up one day to find herself caring for her father, our relationship roles now reversed.

I remember so well the day when I hit rock bottom. The hospital had just released my father a few days earlier after suffering a serious fall and ensuing concussion. His demeanor that day had evolved into a state of unbelievable agitation which left my mother and I terrified. I had already discussed a plan with her should things ever get out of hand, for which I felt unbelievably guilty. He was my precious father, but I knew we had no choice. Throughout the day, we tried to remain calm, feeling as though we were waiting for the inevitable. At some point that afternoon, I knew I needed help. I called the Alzheimer’s Association who then transferred me to the Georgia Chapter. As soon as I explained our situation, I was placed on a conference call with two counselors. Throughout much of the conversation I was in tears. The women with whom I spoke with were so incredibly compassionate in their explanation of the protocol should my father’s agitation become dangerous. I was also given the phone numbers to the respective facilities that would be involved if 911 needed to be called. For several days after that, Alzheimer’s Association staff repeatedly called me and sent emails to ensure that my family was okay. As devastated as I felt, I was also prepared as a result of the kind and dedicated staff who spoke with me that day. I will forever be grateful for their support on a day when my family desperately needed guidance.

Unfortunately, about four hours after our phone conversation, the disease led my father to do the unspeakable, which forced my mother to call 911. Everything that had been forewarned to me had finally come to fruition. I sadly watched my father taken away that night, never to return home again. The authorities sent him to a psychiatric hospital where he was officially diagnosed with Alzheimer’s and Vascular Dementia. Then he was moved into a memory care unit for his safety as well as my mother’s. Over the next several months, my father’s condition continued to deteriorate. He suffered more agitation, a fractured hip and complications from surgery and medications.

On October 22, 2011, my father lost his battle with Alzheimer’s. From the point of his formal diagnosis, he survived less than a year, enduring a level of suffering to which no human should ever be subjected. Though we were not aware of it, I believe that he suffered from this terrible disease for many years prior to the actual diagnosis. I watched Alzheimer’s take my dad from me, little by little. It changed him every day until finally; he was simply a shell of the man I once knew. On the outside he looked the same but on the inside he had changed completely. This vile disease stole everything from him until inevitably reducing him to a stranger. Then when nothing was left, it stole his life.

My ultimate dream is that there will come a day when there will be no more Alzheimer’s or dementia of any kind; when people will be able to live their lives with every precious memory intact until the very end. Until that wondrous day, there are things we can do to make the journey a little easier. Learn as much as you can about this disease; read reference books for knowledge and caregiving stories for support; recognize the initial signs and seek an early diagnosis; contact your local Alzheimer’s Association chapter; find support groups, either locally or online; question every decision for your loved one; advocate for them; make sure a living will is in place; don’t be afraid to ask for help; take care of yourself and most of all, enjoy every precious moment as if it was their last.

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Vanessa Luther is the author of A Life Stolen: My Father’s Journey Through Alzheimer’s, the true account of the devastating, but inspiring journey that she and her father travelled through Alzheimer’s. After earning her Bachelor’s degree in Computer Science, she moved to Atlanta, Georgia where she worked as a Consulting Software Engineer for 17 years. She then put her career on hold to raise her three sons and eventually became her father’s primary caregiver. She currently lives in Lawrenceville, Georgia with her husband, three sons and their dog.

https://www.facebook.com/VanessaLutherAuthor

A Special Note about Long Distance Caregiving

Man on phoneBeing a caregiver is hard enough, but being a long distance caregiver can sometimes leave people feeling like they are disconnected and with feelings of guilt and helplessness.

There are some things that you can do to be proactive with your loved one’s care. Here are some tips to help you get started:

 Quick tips and resources

Getting organized and being prepared can go a long way in helping coordinate care from a distance.
  • Identify resources and use themLearn about what is available in your community by contacting the Alzheimer’s Association at 1.800.272.3900 or using our online Community Resource Finder. You can also use Alzheimer’s Navigator, our free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.
  • Reassess care needs during each visit. Dementia is a progressive disease, and care will need to be adjusted over time. While someone in early-stage Alzheimer’s may live independently, by the middle stage, 24-hour supervision will be required. Each time you visit, assess the situation to make sure care needs are being met.
  • Keep communication going.
    As a long-distance caregiver, you may coordinate many moving parts. Whether it is with family, neighbors or home health aides, set aside time to regularly discuss the needs of the person with dementia. If the person with dementia lives at a residential care facility, set up a regular time with the managing nurse or physician to get updates, and maintain ongoing communication with care staff and friends who visit regularly.
  • Gather pertinent information and keep it handy.
    Make sure you have contact information for physicians, pharmacies, care providers and neighbors, as well as important financial and legal documents easily accessible in case they are unexpectedly needed.
  • Be kind to yourself.
    Living out-of-town does not mean you aren’t involved or that you don’t care. Get support by connecting with others who are long-distance caregivers through our online community.

Read more: http://www.alz.org/care/alzheimers-dementia-long-distance-caregiving.asp#ixzz39jJSEVw8

Caregiver Balance: Learning the Hard Way

By Angela Taylor

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My father was a retired engineer with a love of family, golf, and buddies from his Air Force squadron. I became his caregiver when he developed LBD, a disease unfamiliar to us at the start. Gaining knowledge of LBD was the first step of many that ultimately led to my current role with LBDA. However long before that, I learned (the hard way, of course) about maintaining balance as a caregiver. This is a story about a daughter’s love, dementia, caregiving, and finding balance in the midst of the storm.

LIFE BEFORE LBD

Dad took an early retirement after 30+ years with a Fortune 500 company. He golfed frequently and traveled several times a year on vacations, including visits to see my two brothers and me. The only daughter of an Italian father, as a child I was the “apple of his eye” and that closeness remained into adulthood.

Dad’s sharp mind started to change subtly in his early 60s. At that time, a neurologist diagnosed his condition as mild cognitive impairment. My father lived alone, in our childhood home, with no family nearby. He began calling me for advice or assistance. At that time, I was a full-time, stay at home mom with two young children. My husband and I were both fielding calls regularly from Dad, mostly related to computer issues, assistance with travel plans, and other things he used to handle with ease.

JOINING THE SANDWICH GENERATION

Twice over the next year or two, he stayed with us for a few months at a time to recover from back surgeries. The addition of my sometimes confused, but easy-going Dad to the household was harder than I thought. Suddenly, I was part of the “Sandwich Generation,” caring not just for my own children, but for an ailing parent. His checkbook started to baffle him, so I started “helping” with his finances. Looking back, it was only the tip of the iceberg, as he was soon to be diagnosed with LBD.

After the second surgery, Dad needed support on a daily basis. He couldn’t manage his own medications and had trouble with routine household chores. His cognition waning considerably, Dad was in denial about his condition. My husband and I faced reality that my father would never again be safe to drive or live alone in his home of 30 years. We gently broke the news and together, we discussed his options. Dad decided to move into a long-term care residence, as soon as his house could be sold.

Just like caring for my young children whom I kept safe from harm, this effort now extended to my father. Throughout the time he lived with us, I focused on anticipating Dad’s needs, trying to smooth his transition from independence to dependency. We both felt the grief and anger over LBD stealing away the life he had built over the years, and because I loved him, I tried to spare him as much pain and disappointment as I could. So, I carried the burden for both of us. However, when I’d try to relax at the end of the day, my brain was still working on over-drive.

I admit that I cried often, leaning heavily on my stalwart husband. Interestingly, despite one of my most sacred personal values being balance and moderation, somehow, that value seemed a luxury I couldn’t afford when I was Dad’s caregiver. I made little time for social get-togethers with my friends, stopped exercising, and did little to recharge my emotional batteries. Richard A. Swenson explains it well in his book, Margin: Restoring Emotional, Physical, Financial, and Time Reserves to Overloaded Lives. Paraphrasing him, just as the page in a book has a margin of space around the edges, I had used up my own margin. There was nothing left in me to handle life’s little surprises. We know LBD to be full of surprises.

FINDING BALANCE

Through counseling I learned to focus my attention more on the present moment than the unknown future. From there, I grew to understand that by trying to shield my father from the unavoidable emotional impact of LBD, I was mistrusting his ability to handle his own emotions. When I stopped over-protecting Dad, I grew to appreciate how strong and resilient he was. I stopped carrying a load that wasn’t mine.

I finally acknowledged we were no longer a short term or crisis situation. This pace I sustained for months at a time, I certainly wouldn’t be able to endure for the long term. So my husband and I established new routines we could maintain for years. I started to make decisions balancing what was essential for both my Dad’s care with my own family’s well-being. As hard as it was, I awkwardly practiced setting healthier boundaries, even when it meant disappointing my father.

Here’s a good example of a small change that made a big difference. When living with us, Dad often followed me like my shadow. Later, I realized that he felt more safe and secure when I was around than when he was alone. Looking back, that feels really good but at the time, it was pretty annoying. My husband and I needed some private time to talk about Dad, our children, and our marriage. Unfortunately, my father wasn’t picking up on any subtle social cues any longer. So, we adapted our routine, going to bed an hour earlier some days just to talk, which meant that Dad also went to bed earlier. We also woke up an hour earlier than Dad every day and used that time to have coffee together. These little changes gave us more time as a couple.

When he moved into an assisted living facility, we set up a visitation routine that we kept for the next 5 years. In addition to taking him to all of his medical appointments, I took Dad out once a week for lunch and brought him over every Sunday for a family dinner. There were other times we got together for outings and activities too. No matter what, Dad knew he’d see me in just a few days. He counted on those visits, and they provided me with the space to take care of myself and the rest of my family too.

As caregivers, we all must be honest with ourselves and others in order to remain healthy and well-balanced. That may require requesting or accepting caregiving help from family members or outside professionals. It may mean finding time for a hobby that has no practical purpose in your life other than it makes you happy. Take it from me.

Angela Taylor is the Director of Programs for the Lewy Body Dementia Association. In 2004, Angela joined LBDA as a member of LBDA’s Board of Directors when she was a caregiver for her father who had Lewy Body dementia. Angela now oversees all of LBDA’s programs and services, advocates to federal agencies on behalf of LBD families, and serves as the liaison to the Scientific Advisory Council.

Used with permission, Lewy Body Dementia Association, www.lbda.org, © 2014.  LBDA lockupCS2

There is clear evidence of caregiver burden and grief associated with LBD disease manifestations. It is very important to comprehensively address the needs of patients with LBD and their caregivers, and the Lewy Body Dementia Association is here to help.  To learn more, please visit www.lbda.org.  To view Angela’s story on the LBDA Web site, please click here.

 

15th Annual James A. Kaufmann Golf Tournament

This year marks the 15th year that the James A. Kaufmann Golf Tournament has been raising awareness and money for the Alzheimer’s Association, Georgia Chapter.  The event was started in 1999 by Dr. Bobby and Pam Kaufmann honoring his father, beloved Atlanta physician, Dr. James A. Kaufmann who passed away in April of 2002 from complications from Alzheimer’s Disease. The James A. Kaufmann Memorial Event has raised over $2,500,000 since it began. 

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Carts are lined up and ready to go at Cherokee Town & Country Club

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Golfers are ready to go too, some dressed “to the nines” in their golfer’s attire!

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Volunteers and staff register golfers.

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Golfers enjoy lunch before heading out on the course.

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Ryan Cameron, from V103 introduces the event and gives special thanks to Bobby Kaufmann for hosting each year.

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Alzheimer’s Association, Georgia Chapter CEO Leslie Gregory acknowledges Bobby Kaufmann’s work with a framed photo of his father and plaque of recognition.

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kaufmann_golf_2014-127 Golfers hit the greens!

Limiting Unwanted Calls And Emails

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Some phone calls and emails are important, some can be annoying, and others are just plain illegal. When you are caring for a loved one with dementia – some of these calls can also be dangerous. It is not uncommon for older adults to be frequently solicited by a variety of organizations – some legitimate and some not. While many of us may be able to tell the difference between a real organization and a false one (though it seems to get more difficult every day!)- a person with dementia may or may not be able to tell. A person with dementia may also offer up extensive personal information that can be used to steal their identity or their assets. These offenses are terrible and while it is very difficult to deal with the aftermath of such an assault, there are some things you can do to protect your loved ones.

The Federal Trade Commission’s Website offers up a wealth of information and resources to help you reduce the number of unwanted messages you get by phone and online.  Learn more here:  http://www.consumer.ftc.gov/topics/limiting-unwanted-calls-emails

WALK Season is here!

WALK to END Alzheimer's

Dear Readers,

Each year, you probably hear about it: The WALK to END Alzheimer’s. Several years ago this event was called The Memory Walk. But, we felt like that might not be getting the message across quite right. We aren’t just walking because Alzheimer’s exists, we are walking because Alzheimer’s should NOT exist. We are walking to END Alzheimer’s – through our presence we are increasing awareness and through our donations we are increasing research efforts to bring an END Alzheimer’s.

It’s that time of year again – each summer we start gearing up for the walks that will take place across the state of Georgia in the fall. These events are wonderful – there is music, there is energy; there are ways to sign up to engage in clinical trials; you can get more information about the programs and services in your community; and you can register to become an Advocate and meet with legislators about supporting our efforts to END this disease.

If you don’t have much money, share your time – participate in the WALK or volunteer with us. If you don’t have much time, make a donation. If you don’t have much of either – share your VOICE – share our message with your friends so that they can register, donate and get involved. All of us can find a way to help END this disease! And together, we will.

Take the first step to a world without Alzheimer’s by finding a Walk near you. Once you register, you will have access to a wide range of tools and support through your Participant Center, ensuring a successful and fulfilling experience.
Our mission
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Our vision
A world without Alzheimer’s disease.

Flower Power at the Walk to END Alzheimer's