Aug 152014
 

When my mother Naomi was diagnosed with Alzheimer’s in 2010 at the age of 70, my father, Jack, actually started cooking for the first time in his life. Through the painful realization that we were losing our beloved mom and wife, we found humor in the situation. My father had actually entered the kitchen! This post is an excerpt from The Lost Kitchen: An Alzheimer’s Memoir and Cookbook, which chronicles the story of how my family struggles to maintain balance—and laughter—in the face of a devastating diagnosis.Rony Nathan Photography

Mom doesn’t remember the wedding. She doesn’t remember dancing with my new daughter-in-law or being photographed with her grandson the groom, or even swing dancing with her husband. These are the moments that shine in my memory. I will remember for her.

In the weeks leading up to the wedding, it was kind of fun to tell Mom every time we met that my oldest was about to get married. I’d show her the invitation and we’d count the days. She’d ask me about his bride, and I’d tell her how they met through their youth group, and that they’ve been going out since high school. “Have I met her?” she’d ask.

The morning after the wedding, it was already lost. Getting dressed in our finest clothes, putting on makeup, walking into the beautifully decorated hall. The emotional meeting of bride and groom after a week’s separation, the way my son cried with love and anticipation as he performed the bedeken, the veiling ceremony, and watched his lovely bride walk towards him under the chuppah, the canopy. The fraylich joyous dancing, the hugs and kisses from friends and family. All gone. As if it didn’t happen.

If I’ve learned anything about Alzheimer’s, it’s that though Mom’s past might be lost, and her future is, well, non-existent, her present is immediate. Every moment that she spent at the wedding was fully experienced. One of the absolute highlights in an evening of amazing experiences was when we presented Mom with a birthday cake for her 73rd birthday. The band came over and played “Happy Birthday,” then seamlessly switched to swing music. Daddy grabbed Mom’s hands and that was it, they were dancing as they love to do, twisting and twirling together in fluid motion. The whole hall was clapping and watching, and nothing else existed at that moment.

That’s one of the lessons I’ve been trying to learn from her: live the now fully. How do I feel? Exuberant! My son’s wedding was filled with blessings. And I feel sad. We’ve accepted the terms of this disease. We’ve taken on her care knowing what’s to come. It doesn’t make it easier to watch her deterioration, but it does mean that we are prepared to handle what comes next. We’ve already steeled ourselves emotionally to the changes she’ll continue going through. Holding conversations with her is getting particularly difficult. We have to supply the words that she can’t recall, and steer her to the conversation’s conclusion. So many people said hello to her at the wedding. She kept asking me who they were, how I knew them, what they were doing there. The trick is to stay patient and keep smiling. Being with Mom does not have to be sad; Mom is happy—even with Alzheimer’s.

I had several conversations this weekend that will stay with me for a long while. My cousin who spoke about the death of his father, my beloved uncle: “While you’re going through it, you don’t think about what you’re doing. You just do it. And you don’t think of yourself with pity. Afterwards, you look at your hands and you ask yourself, ‘Did I really bathe and feed my father? Did I really take care of him in such an intimate way?’”

My sister-in-law who has a degree in gerontology: “There are so many ways you can approach Alzheimer’s. Your mom is so full of life. She is a pleasure to be with, and that’s what you have to focus on.” She didn’t need to mention that her mother, my adored mother-in-law, is also having trouble remembering.

One of the hardest conversations was with my brother: “I don’t know when I’m coming back,” he said. “Mom’s sentences and thoughts are becoming disconnected. At this rate, she might not recognize or remember me.” My brother lives in California. I live in Israel. There’s a lot of geographical distance between us. “I’m sorry I’m not here to help you more.”

My brother does help. He calls daily to speak with Mom. He even made her a pictorial family tree for her to identify her kids and grandkids. I told him it wasn’t worth being sorry, that regrets are the past, and the past is over. But I am sorry. I’m sorry he’ll miss the joy of being with Mom while she is still so present. Nothing can replace that as she slips into forgetfulness.

Challah Recipe

In preparation for the family Shabbat after the wedding, I took the time to bake challah, traditional bread eaten on Shabbat and other Jewish holidays. My signature challah is a combination of white dough and whole wheat dough arranged in a circular baking pan with white and black sesame seeds sprinkled on top. I also like to braid challah with four-strands. When you make challah every week, you start to sense how the dough will turn out. If you are trying challah for the first time, there are a few tricks you can employ to make sure it turns out well.Challah3

  1. Adding a little oil to your hands allows you to knead the dough without it sticking.
  2. If it is too sticky, add more flour.
  3. Whole wheat flour needs more water than white flour to become dough. Don’t be shy about adding more than the recipe calls for, but add it in small amounts.
  4. Let the dough rise in a warm place like the top of the refrigerator.
  5. If the dough hasn’t risen much after two hours, kneed it, shape it, and when you’re ready to bake it, bake at a low temp (200°) for about 10 minutes before you turn up the oven to 350°.

 

Ingredients:

For the two-toned white and brown challah effect, you need to make this recipe twice, once with white flour and once with whole wheat flour.

8 cups white or whole wheat flour

1 cup sugar (can use brown sugar)

1 tablespoon  yeast

1 tablespoon salt

1½ to 2 cups warm water

½ cup vegetable oil

1 egg for the dough

1 egg for brushing on top

Sesame seeds

Directions:

In a large bowl, mix flour, sugar, salt and yeast. Make a large indentation in the mixture. Pour warm water, oil and egg into bowl. Using your hands, mix until you form a small ball of dough. Lift dough out of the bowl and knead on a floured surface until the dough becomes uniform and smooth. Place dough back in the bowl and coat with a thin layer of oil. Cover bowl and let rise in a warm location for two hours until dough expands in size. After two hours, knead dough until all air bubbles are gone. Divide and shape dough into braided or rounded challahs. Place on a baking sheet (covered with parchment paper ) and let rise at least another hour in a warm location. Just before baking, brush top of challah with beaten egg and sprinkle with sesame seeds. Bake at 350° for 20 minutes or until bread becomes golden brown.

 

About the Author: Miriam Green writes a weekly blog at thelostkichen.org that chronicles through prose, poetry and recipes her mother’s battle with Alzheimer’s.  Her unpublished cookbook, “The Lost Kitchen: An Alzheimer’s Memoir and Cookbook” is filled with advice for the novice cook, easy and elegant recipes and home-spun caregiver advice. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. Miriam is a 20-year resident of Beer Sheva, Israel, and a mother of three.

 

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Jun 182014
 

My mom has Alzheimer’s.  And it’s not easy.

Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong.

I was born when my mom was 37 and my dad was 41.  They had already “finished” their family – my sisters were 17, 15 and 13 – but welcomed the surprise.  My mom was involved in everything in our little town, from Rotary Club and the school board to attending college while working full time.  As the matriarch of the family, everyone in town knows her.  The entire family, including Dad, look to her in order to be in the know.



Thanks to you and your votes, the Alzheimer’s Association won a $75K donation in the DSW Leave Your Mark contest.View video

So we weren’t expecting it when we noticed she was not quite on her game.  She was forgetting things. As many tend to do, we attributed it to old age at first.  Because I wasn’t seeing her weekly or even monthly and now lived two hours away, I noticed more dramatic changes than my father and sisters did. We realized that mom should see a specialist, and once she did, we learned what we had feared – mom had Alzheimer’s.

For a while, Mom didn’t want anyone to know.  She was a well-respected community leader still serving on the school board.  As a family, however, we needed support as much as mom did. My sisters and I began researching and reading whatever we could to learn more about the disease; what we should expect, how we should begin planning.Mom n me laughing

I came across the Alzheimer’s Association’s website and started looking for local meetings that I could attend in order to educate myself and my family. I registered for the Walk to End Alzheimer’s and got my family involved.  Mom finally became open to sharing her diagnosis and began “letting go” of some of the things she had always done and accepting help.  This was not easy for her to do, but my mom is strong.

I get my strength from her. We aren’t victims of this disease. We are fighters.

Each of us girls has our strong suit when it comes to taking care of our parents.  From daily home maintenance like mowing the lawn and keeping track of medications to legal planning, paperwork and research, we all have our role.  My dad continues to be my mom’s primary care giver, but as he is not in good health, this wears on him.  But he would never complain, because that’s not what he does.

For me, connecting with the Central Ohio Chapter of the Alzheimer’s Association has provided the support and education I need to face this disease. When I attended my first monthly “happy hour” meeting, I met others like me – moms with young children who care for a parent with Alzheimer’s.  Two of those women continue to be part of my personal support system.  We are all in very different stages now, but when I have a bad day, I can message or text them, and they understand what I am going through like no one else in my life.

Me and Mom St JOne of these women invited me to go to some classes with her that would help me understand what my mom was going through using role play.  At first it seemed kind of silly, but boy did I learn a lot about how I was making things worse when I interacted with my mom! Now I try not to correct her, and I try to understand the frustration she must feel when she recognizes that she is forgetting things.

Knowing about what resources are available has helped me in other ways, such as researching financial advice in order to hold onto the childhood property that has been in my family since our grandparents came to America from Czechoslovakia.  For me, planning and understanding how to have these difficult conversations with our family as a whole has been vital.

And as for mom? She benefits from talking to others with the disease at awareness meetings. Seeing friends in her community decline due to Alzheimer’s is difficult, but it helps her prepare for the future.  Meeting with people who are so driven and determined to defeat this disease gives us hope. Advocates with no personal connection to the disease who speak in local meeting provide assistance and news. Everyone plays an important role.

I’m a doer. And as a woman, the daughter of someone with Alzheimer’s and a mother, I know something needs to be done. I don’t back down. I am not embarrassed to ask for help. I’ve developed control so that I don’t allow this disease to make me a victim. I am never a victim… I get that from mom.

About the author: Patti Gilligan, a director of change management at DSW Designer Shoe Warehouse, nominated the Alzheimer’s Association as one of seven charities competing to win a $75,000 donation in DSW’s Leave Your Mark program. 

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Nov 252013
 

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

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

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

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

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

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

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

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

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

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

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

 

About the Author 

Sherri Snelling, CEO and founder of the Caregiving Club and author of “A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care,” is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.  She is the former chairman of the National Alliance for Caregiving.

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Jun 212013
 

the longest day, ACBLMy daughter and I experienced the longest goodbye during my husband’s decade-long struggle with Alzheimer’s dementia. Henry died in March of this year.

Henry taught me to play bridge more than 30 years ago when we were courting. My daughter, as a little girl, learned how to play the game while sitting on his knee.  Playing bridge became a tradition with my family as we played weekly with friends, and whenever we went to California to visit Henry’s mother (also a very fine bridge player).

All day today, people across the country are doing the things they love as part of The Longest Day, an Alzheimer’s Association event to raise funds and awareness.  Some will participate by hiking, cycling, swimming, sailing, bowling, dancing, painting, running, skateboarding or rock climbing. We are playing bridge.  The Longest Day gives my daughter Kristen and me a chance to honor his memory in a very tangible way.  I am very grateful that Donna Compton, the owner of our bridge club in Dallas, chose to participate in this very special day.

Henry was a brilliant scientist, unfailingly kind and interested in making a difference in the world and in people’s lives.  He was diagnosed with posterior cortical atrophy, a variant of Alzheimer’s, in 2006; but continued working until May of 2009, when he retired after 31 years with the United States Environmental Protection Agency—determined to continue living according to his goals instead of giving in to depression or desperation.  He and my daughter stayed active in the community, especially with the YMCA for which they both raised thousands of dollars each year during the Y’s scholarship fund drive. Before he passed away, Henry made the decision to donate his body to the University of Texas Southwestern Medical Center Memory Research Unit.   Until the very end, he was committed to doing what he could to make a difference.

Participating in The Longest Day allows me to be part of a movement and most importantly, carry on my husband’s legacy for the study and eventual eradication of this dreadful disease.  My involvement in this event has given me a new perspective on everything we’ve gone through over the last few years. As I play bridge, I will reflect upon the truly blessed life we had and the nobility with which my dear husband faced his inevitable decline.

I feel as if I owe my service to Henry, to my community and to all of those suffering with Alzheimer’s disease as well as their loved ones.  Seeing our community and others come together shows me that this disease affects everyone in some way.  Sharing our stories, journeys and supporting one another has been an incredible experience. I can only hope that what we do today, in this unified effort, will truly have a lasting impact for the Alzheimer’s Association and the fight to find a cure for this devastating disease.

About the Blog Author: Laura Onsgard lives in Dallas, Texas.  She is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to raise funds and awareness for Alzheimer’s care, support and research.

Jun 132013
 

Christina and Giovanni It was a perfect summer evening.  The sun was just starting to go down and there wasn’t a cloud in the sky.  I was home from college on a visit to introduce my parents to my new boyfriend (my now husband).  We sat on our patio, enjoying our evening together.

My father, Giovanni, summoned me into the kitchen through the window overlooking the patio.  I excused myself, assuming he wanted some help in preparing the food and getting the table set for dinner.  While I was correct that my father needed some help in the kitchen, I was not prepared for the kind of help he was asking for.

My father, an Italian man and one of the best chefs I have ever known, was asking ME for help on how to cook his signature pasta dish that I had requested he make for this occasion.

I could see the sadness and sheer terror in his eyes that he was asking me for assistance on something he previously could do with his eyes closed.  Immediately, I sprang into action, telling him not to worry, assuring him that we all have days like this sometimes, and that it had been a long time since he had made the dish.  But deep down, I knew something was very wrong.  It wasn’t long after this occasion that my father was officially diagnosed with Alzheimer’s disease.

More than six years have passed since that summer night.  During that time, my father gradually forgot every pasta dish he ever made; he forgot the simple daily acts we take for granted; the disease robbed my father of knowing that I was his daughter — and finally, of his life.

Here is what my journey with my father taught me: Alzheimer’s changes things, but there is still a person inside.  Even after this disease progresses, there are ways to share meaningful moments.

A special recipe to share

Make a tax-deductable donation to The Alzheimer’s Association and receive a downloadable recipe card of Giovanni’s signature pasta dish as a thank you for your donation.

donate

One of my favorite memories of my father is of my wedding day.  It was toward the end of his illness, and he was having more bad days than good.  I wasn’t sure he would be able to attend. He was having trouble walking at that point. But he made it – and something amazing happened.  Not only did he walk – he lit up.  He was back to being an entertainer and a host and he loved every minute of it.  We danced to Sinatra’s “The Way You Look Tonight” and he looked so happy.  We both were.

As my father’s youngest and only child in the United States, I always tried to be strong for him, and support him in any way that I could. Our time together has inspired me and shaped the woman I’ve grown to be.  My father’s journey affected my career choice. I now work for the Alzheimer’s Association, providing education and guidance to other families trying to navigate this awful and often mysterious, challenging disease.

Now that my father has passed away, the greatest gift I can give him is doing my part to help end this disease for other families. I hope that my effort to help others, I honor my father, who was one of the most gentle, kind and caring people I have ever known.

Happy father’s day, Dad. I love you and miss you.

About the blog author:  Christina lives near Chicago with her husband, two dogs and a cat.  They are expecting their first child later this year.  She works at the Alzheimer’s Association helping other families dealing with dementia. 

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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

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