We Have Now

IanDKeating_MotherandChildWalkingDownaPath

Courtesy of Flickr/Ian D. Keating

Faithful readers may have noticed there’s been a lot more talk of goodlifery than homesteading lately. There’s a good reason. Two reasons, actually. My Mom and Dad.

Both are battling their own long-term illnesses, and I feel fortunate that my sisters and I are able to look after them. While caregiving can be all-consuming, I never cease to be amazed at the lessons my parents are still teaching me. Especially my mother, whose Alzheimer’s has stripped life to its very essence.

  • There is no past or future. Only the present. Your previous successes or failures don’t matter. Regret and guilt are a waste of time. There is only this moment, maybe sitting in a swing, holding the hand of someone you love, someone you suddenly realize won’t always be here. Savor each moment and live in it fully. Memorize it. The rest of the world can wait.
  • Say “I love you” to the end. Mom only has about three sentences left in her repertoire, but one of them is “I love you soooo much, baby.” Let it be said of all of us that love is the last thing we let go of.
  • Memories can save you. A few days ago, Mom was in the hospital and absolutely terrified of the needles, the pain, the moving bed, and the constantly changing faces around her. Nothing could console her as she wept for hours. At one point, I began reminiscing about Nugget, our old dog who hasn’t been with us for thirty years — a dog who worshiped my Mom and was never more than a few feet away from her for twelve years. Within two minutes, she smiled, closed her eyes, and drifted peacefully off to sleep. My sister and I stared at each other in disbelief. Never underestimate the power of your memory. So store as many people, experiences, and adventures in there as you can. You never know when one might show up to save the day.
  • Don’t hide from heartbreak — joy is often lurking in its shadows. With Alzheimer’s comes confusion, fear, and lots of tears. When Mom is crying, I like to read to her and sing lullabies. It doesn’t always help, but when it does, it’s the most profound connection. I find it beautiful when I can comfort her now as she did when I was little. We’ve come full circle, and that’s how it’s supposed to be.
  • Don’t whine about chores. Emptying the dishwasher and doing laundry now feel like a privilege. And every time you take a shower, enjoy it for the luxury it is. None of us will be able to take care of ourselves forever, so give thanks for your independence.
  • Enjoy food. No matter how bad things get, Mom relaxes and enjoys the experience of eating more than anyone I know. A treat like ice cream will send her over the moon. With every bite, she lets herself be nourished physically and emotionally — a lesson we should all take to the dinner table.
  • We have now. This interview (click on 4EVER YOURS) makes me weep just thinking about it. But it’s true of everyone we love. And that’s what makes each moment with them that much more special.

Does all this positive thinking mean I’m unrealistic and don’t grieve? Of course not. Everyday, my heart breaks in ways I never knew possible, usually when I least expect it. But happiness depends on the choices we make, how we react to the dark times. And I will always choose light over darkness. I may be unraveling now, but that just gives me a chance to tie stronger knots.

And that strength — one last gift from my parents — will stay with me, even after they’re gone.

 

jenn1

This blog was originally published on Jenn’s personal blog: http://thedewabides.com/we-have-now/. In addition to being a caregiver, Jenn is also an avid blogger, do-it-yourself-er and the Director of Outreach and Education for Chattahoochee RiverWarden. We are grateful for the opportunity to share Jenn’s beautiful words on our blog this week.

The World of Dementia, According to Eunice and Don (1)

Hello! I’m Eunice Sykes, a newcomer to the world of memory impairment maladies, e.g. dementia, mild cognitive impairment (MCI), Alzheimer’s. Several months ago, Kara, a staffer at the Alzheimer’s Atlanta, GA Office, invited me to write a blog on the Alzheimer’s website regarding my journey into the land of memory problems. She attended one of the monthly Forget Me Not luncheons that my husband Don and I attend.  Another staffer, who knew I loved to write, connected me to Kara.

Please know that never in my remotest or wildest dreams would I have thought I would be in the position of a blog writer. Yet here I am. I am reminded once again to “never say never.” You see, I didn’t ask to be part of the illustrious Forget Me Not group. I was content to be a writer on the sidelines, having recently published a book called Mashed Potatoes in My Salad: An Alzheimer’s Caregiver Memoir. While writing my book, though, my interests became more than just getting a wonderful, chock full of lessons story told of a woman (not me) who has survived this journey on her own terms.

It was indeed serendipitous, providence and fate that caused this moment to bring us together. My husband Don, a retired fortune 500 electrical engineer, was recently diagnosed with mild cognitive impairment. Little did we know that was in our future. A future that twenty years old that gave me the opportunity to meet and marry the “best husband I’ve ever had.”

Now, because of Don’s illness, I, we, get to be in the midst of a world of courageous, understanding, compassionate, knowledgeable, funny, and resourceful people that I’ve grown to love and admire. With this group, I don’t feel so alone, so afraid, and I can keep things in perspective. Doesn’t God have an interesting sense of humor?!

Over time, I hope to provide a voice of care partner and of Don. My goal is to apply good humor and good writing skills to a message that encourages, inspires and informs. Until next time, I am courageously…

Discovering what’s next!

- E

Eunice Sykes

A writer all her life, Eunice is a full time author, poet, and editor. She has written and published three books: My Own Story, From Kibler’s Bridge to Miller Road: 65 Years of Christian Service in the African Methodist Episcopal Church, and Instant Church: My Millennium Musings (selected poems) and has edited one, Mothers of Hope.

 Her fourth book, Mashed Potatoes in My Salad, published in the fall, 2014, tells the poignant story of a woman, who after several unsuccessful and abusive relationships, finally finds the man of her dreams under unlikely, risky and daring circumstances, only to end up in caregiver roles time and time again as he endures serious illnesses– including the ultimate, life taking disease Alzheimer’s.

 In her spare time, Eunice chases that elusive little white ball, honing her golf skills. You can also find her leading Ebony Eyes Red Hatters, a group of lively, energetic, fun-loving women. Born in Ohio and raised in northern West Virginia, Eunice lives with her husband and soul mate Don near Atlanta, Georgia. Her email address is eunsyk06@myway.com.

Doesn’t Medicare Pay for That? Understanding Medicare Coverage for Dementia Care

medicareCallers to our 24/7 Helpline often want to know more about care resources.  In these discussions, counselors frequently hear the question, “Doesn’t Medicare pay for that?”  Much to the dismay of many, the answer is often, “No.”  As families look ahead to planning for how they will pay for a loved one’s care, it’s important to have an understanding what Medicare covers, together with what it does not cover.

Here are some important facts about Medicare, with respect to the care of a person with dementia:

Medicare does not pay for on-going “routine” care of a person with dementia.

 

  • Instead, Medicare coverage is focused on rehabilitation services, following an illness or injury for which skilled nursing services are needed. For example, Medicare may cover home health visits and physical therapy following surgery for a hip fracture.  Or, Medicare may cover these services being provided in a skilled nursing facility.  Whether the services are provided in the home or in a nursing home, the services will be

 

  • Medicare Part B does help to pay for the evaluation/diagnosis of a person with memory problems. This is part of coverage for physician office visits. Medicare Part A will also help pay for evaluation that sometimes takes place as part of a hospitalization.

 

  • Medicare does not pay for Adult Day Care .

 

  • Medicare does not pay for a daily caregiver to stay with the person in the home while a caregiver goes to work every day.

 

  • Medicare Part D provides prescription drug coverage. Enrollment periods run from November to December every year.  If changes in a person’s Medicare Part D plan are needed, it’s important to make them during the enrollment period; otherwise, there will be a wait until the next enrollment period.

 

  • The Medicare website offers a useful tool for searching for nursing homes. It is called Nursing Home Compare, and it allows a person to search by county, state, zip code, etc. Extensive information on each facility is provided, including a rating based on the facility’s last inspection. An easy way to access this part of the Medicare website is to simply “google” the words Medicare Nursing Home Compare.

 

  • Medicare has coverage for hospice services for a beneficiary who, in a physician’s judgment, may have six months or less of life. It is important to keep in mind that this six-month expectation is only a physician’s estimate and that many people live considerably longer after entering hospice care.  These services require a physician’s order.

 

  • For additional Medicare information, call Medicare at 1-800-633-4227, or visit the website at medicare.gov.

 

Susan Formby, LCSW

Care Consultant GA Chapter

 

“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

balance

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.