Feb 162017
 

I am a hospice and palliative care nursing assistant for people living with Alzheimer’s disease.

I have experienced countless moments of bathing and toileting people who have forgotten what toilet paper is, and countless minutes flipping through photo albums pointing out family members, picture by picture. Most importantly, I have countless special memories of holding someone’s hand as death washes over and a sort of freedom sets in.

I have been someone’s doctor, someone’s granddaughter and just about anyone other than me because the Alzheimer’s tells the person with the disease otherwise. This is why I chose to advocate. I am more than a hospice and palliative care nurse assistant. I am a voice.

There’s something special about being a voice with the Alzheimer’s Association. The passion that flows within the physical walls of the organization and its people is rejuvenating; there is an overwhelming sense of pride in knowing that you’re a part of something that really matters.

The Making of an Advocate

I had been actively volunteering at local Alzheimer’s Association events when the volunteer coordinator suggested I look into a new group called the Young Advocates. Despite the fact that I had no clue what advocacy was, I decided to attend a meeting.

At the time, I knew nothing about politics. I couldn’t tell you how a bill becomes a law, how many districts were in my state of Georgia, or who my legislators were. I didn’t know what the impact of public policy was for those living with Alzheimer’s. I just knew my personal connection to the disease drove my passion. Along the way, I have learned that that’s enough. I felt the importance of the group at that first meeting, and ended up leading the group with another attendee.

A little over two years ago we were a group of five. Today the Alzheimer’s Association Georgia Chapter Young Advocates Group consists of 25 young adults that are passionate about Alzheimer’s advocacy. Together we learn how to make the needs of a community a part of legislation. We’re learning how to better use our voices, and as we grow in numbers, we grow in wisdom and perspective.

I’ve had the pleasure of advocating at both the state and federal level. We work throughout the year, holding meetings at our representative’s local office as well as traveling annually to the annual Advocacy Forum in Washington, D.C.

This spring, I’ll be heading back to Washington, D.C., with fellow advocates for the Alzheimer’s Association Advocacy Forum. I’m not sure I can conceptualize all of the magic that happens at this annual event. From the opening roll call of the states to the national dinner, state caucus training sessions and the last day where over 1,500 advocates from across the country march to Capitol Hill in our purple sashes, sharing our stories and our vision for change, it’s beyond moving.

As a young Alzheimer’s advocate, Forum is a chance to discuss my own vision and learn about the policies other advocates are implementing in their states. It’s also an opportunity to connect with other members of the Alzheimer’s Impact Movement, the nonpartisan sister organization of the Alzheimer’s Association that is working to make Alzheimer’s a national priority.

I know that the biggest impact is made when we all come together to share in fight to end Alzheimer’s. It’s like Mother Teresa said: “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” I alone may never see the end of Alzheimer’s disease, but together we can create ripples that will eventually lead to a world without this disease.

Every time I am with other Alzheimer’s advocates or meeting with my elected officials, I am ignited and inspired. It’s as if ending Alzheimer’s is not only possible, it’s inevitable! As advocates for the Alzheimer’s Association, we are making change happen. Each change to legislation is a win. It’s a moment where we have honored those we’re advocating for. It’s a life we’ve changed for the better. It’s one step closer to ending Alzheimer’s disease – and it’s our voices that are helping make it happen.

About the Author: Native to Atlanta, Georgia, Sarah Collett is currently pursuing her master’s degree in social work with a graduate certificate in gerontology at Georgia State University. Sarah enjoys music, reading, community organizing and serving as a volunteer advocate for the Alzheimer’s Association. 

Learn More:

Jan 132017
 

My dad and I tried to take Mom’s rings off today, but we had no success. In addition to her wedding and engagement ring, Mom wears four other rings, each one tightly hugging her fingers, so much so that even with liberal amounts of lubrication, the rings do not come off. She’s been wearing them for so long that her fingers have shaped themselves around the rings.

Mom has gained weight and her fingers are bigger than they used to be. She does not have pain in her fingers from her rings; they are not cutting off circulation (yet). But they look like they might.

The problem is that Mom won’t let me or my dad attempt to remove them. If we are to avoid cutting them, we have to be able to work them off each finger a little at a time, which may hurt if not irritate the fingers. I have visions of us putting Mom under local anesthesia in order to avoid a big scene.

Do the rings really need to come off? If the answer is yes, then we can’t let our fear of Mom’s Alzheimer’s stop us from doing the job. We’ve experienced Mom’s reaction to “invasive” medical procedures like a mammogram or taking blood samples, collecting urine or getting a flu shot.

Each time we go back to the clinic, I weigh the significance of the test or procedure not only in terms of its importance to mapping Mom’s health but also to my ability to cajole, persuade, wheedle, charm or even bully Mom into doing something she is disinclined and incapable of doing. If Mom won’t pee into a cup on the first try, she may do it on the fourth or fifth. She may be willing to let me help her, or miraculously, do it independently. Perhaps bribing her with chocolate will do the trick.

Mom is occasionally aware of her weight gain. “I’m getting so fat,” she’s said as she’s dressing. The good thing is that a comment like that is soon forgotten. I’m sure most women would love to be blissfully oblivious about their appearance, or at least unselfconscious of their bodies.

Mom certainly has a higher caloric intake than she needs. And the amount of exercise she engages in—usually in the form of walking—is insufficient. That’s a bad combination for an older person whose metabolism is decreasing.

I’m reminded of a nursery rhyme from my childhood:

“Ride a cock-horse to Banbury Cross
To see a fine lady upon a white horse;
Rings on her fingers and bells on her toes,
And she shall have music wherever she goes.”

Let’s keep the music, but the rings might have to go.

A jeweler may be more kind to the rings (and fingers) than a surgeon, if we can find one who will saw them off. Imagine needing to own a saw to cut rings. Apparently, once they’ve been cut, assuming it’s on the joint of the ring, rings can be soldered back together and resized. Mom would likely miss wearing her rings, but if we do have to go through it, we’ll only be doing it once.

If eating a good chocolate dessert gets Mom out of a funk, I might even prescribe a second slice. One of our favorite winter desserts is banana cake or bread or muffins, preferably with chocolate chips. If I find myself with overripe bananas, I’ll put them in the freezer until I’ve collected enough to make this moist, flavorful recipe.

Banana Muffins

Desserts that are “diet” can also be tasty. Here’s a way to cut down on the calories without compromising on the taste. Don’t just have one, though, eat three!

3 ripe bananas, mashed
1 banana, sliced
1 cup flour
2 tablespoons sugar
1 teaspoon baking soda
1 teaspoon baking powder
¼ teaspoon salt
2 eggs
¼ cup oil
1 teaspoon cinnamon
1 teaspoon vanilla

Directions:

Beat eggs and oil then add sugar, vanilla and mashed bananas. Add dry ingredients and mix to form a consistent batter. Place one heaping tablespoon of batter into each paper cupcake holder (size #3). Place a slice of banana on top. Bake at 350 F for 15 minutes.

 

About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. She is currently searching for a publisher for her cookbook, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. She holds an M.A. in Creative Writing from Bar Ilan University and a B.A. from Oberlin College. Miriam is a 20+-year resident of Israel and a mother of three.

Dec 222016
 

The holidays have long been known as the season of joy, but how do you truly define joy? As someone living with Alzheimer’s disease and approaching my first Christmas since receiving the diagnosis, I’m beginning to define joy differently than I have in previous years.

While I previously found joy during the holidays in festive decorations, music, meals and parties, I’ve come to realize these are fleeting. This year, spending time with my family, making new memories and remembering past holidays are the activities that bring me the most contentment.

In fact, joy has become less of a feeling and more of an action for me. I actively rejoice for the blessings I have in my family and friends. I show joy through acts of love and have let go of the small stresses that would’ve stolen my happiness during previous holidays.

Some will read this and wonder how I could possibly rejoice given the circumstances of my disease and its prognosis. Alzheimer’s is a fatal disease that has no cure. It worsens over time – slowly causing problems with memory, thinking and behavior, and it will eventually rob me of my ability to respond to the world around me. The disease will ultimately take my life, typically in eight years from now.

It’s not easy to cope with the reality of Alzheimer’s, but my faith has helped me rejoice this holiday season. Alzheimer’s is part of me now, but it does not define who I am. Alzheimer’s may have changed my brain’s biology, my personality and my expressions, but I tell my family that the essence of who I am in my heart remains the same.

Further, Alzheimer’s disease has added greater purpose to my life. For example, I put my joy into action by joining an advisory group of people in the early stages of Alzheimer’s through the Alzheimer’s Association. Working with this group to raise awareness, reduce stigma and help others living with this disease has provided a great sense of resolve and happiness in every season since my diagnosis.

If you or a loved one has been diagnosed with Alzheimer’s, it’s important to never deny the disease. While it can be painful to accept, it’s important to know that you are not alone – help and support services are available through the Alzheimer’s Association.

Until there is a cure, I am determined to continue living my life with Alzheimer’s to the fullest and helping others experience joy as we navigate the challenges and changes brought about by this disease. As I look toward my first Christmas with Alzheimer’s, relishing in the love of my family, my faith and kindness from others are the pillars of my season of joy.

May you, too, find joy in every circumstance.

About the Author: Jeff Borghoff is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group (ESAG).


Learn More:

Dec 212016
 

Alzheimer’s has touched Madison Cowan’s life more than once. Both his father and father-in-law passed away from complications of Alzheimer’s disease. Here he shares the importance of food, family memories and enjoying every moment this holiday season.

My most prominent holiday memory is of my stepmum, who I consider my mum. I recall entering her home to the aroma of fresh-baked pastries wafting through the door. She had 10 children, and although her holiday party would include nearly 25 people, she would put together every cake, pastry and pie herself. She was astounding.

She was also astounding through my father’s 12-year-struggle with Alzheimer’s.  The love and care she provided spoke to her strength and character.

My memories of holidays with my mum and dad are phenomenal. While I was growing up in London, my mum and Dad lived in the inner city of Detroit, and the time I was able to spend in the States with them over the holidays was magical. It was quite a respite to get away. When I was at home in America, all I felt was the warmth and safety that a child does. Because I had that protection at home, it was a beautiful place and time.

The recipe I associate the most with that time is my mum’s 7-Up cake. It was by no means a healthy option, but it was the lightest, most delicious thing I ever had in my life. I’m making it for the first time for my family this year, and they are holding me to that promise! She also made German shortcake, coconut layer cake, sweet potato pie, holiday rolls and pecan pie. I salivate just speaking about that time.

Dad, who loved that cake, was a big proud man who was just a shell of that when he died at the age of 78. He gave me an appreciation for life and taught me to always cherish my loved ones.

I watched my father struggle day in and day out in the 12 years that he lived with the disease, and I relate most of that time to my mum. She embraced me when she didn’t have to; she helped shape the man I became and am today. She made certain I knew my way around the kitchen and would never have to depend on anyone for a meal. That is sage advice I now impart to my own daughter.

Dad also taught me to focus on family. My daughter just received her winter report card with honors, so that is something we will celebrate. I only demand that she is a compassionate, open-minded person who respects herself and others – the educational portion is simply a bonus. It is a delight to spend two weeks off with her during this holiday season.

Although I am a shrewd businessman, when it comes to play, I am probably one of the biggest kids of all. We will spend our time in New York together cooking, shopping and watching vintage retro Christmas specials on the telly. I am well-versed in the holiday films – 1938’s “A Christmas Carol”, “The Little Drummer Boy”, “Rudolph”, “It’s a Wonderful Life”, “A Christmas Story” – all the hyper-holiday films. I especially enjoy the cheesy 1964 ‘B’ film “Santa Claus Conquers the Martians!” With all of the things going on in the world, you have to be able to escape from it all from time to time.

Tomorrow isn’t promised to any of us. The power is in the present moment, and it’s imperative to enjoy each other. Focus on the things that are most important. My policy is this: if you’re not a positive person, check it on the other side of the door. I am all about good times, warmth, happiness and food. I wish you and yours the happiest of holidays. Be kind to one another.

About Madison: Madison Cowan is a family man and chef with roots in London, Jamaica and Detroit. CEO of Madison Cowan LLC, he is an author, producer and Food Network’s Iron Chef America & Chopped Grand Champion.

 

JEAN BEAN’S 7-UP POUND CAKE

This cake has a feather-light texture and a buttery, crunchy topping.
Servings: 12 – 15

3 cups unbleached cake flour, sifted
2 cups unrefined cane sugar
1 pound unsalted butter, softened at room temperature
6 eggs, room temperature
1 teaspoon pure vanilla extract
2 teaspoons lemon extract
¾ cup 7-Up lemon soda, room temperature

Heat the oven to 375 F. Place the flour into a large mixing bowl and make a well in the center. Add the remaining ingredients and blend with an electric hand mixer until smooth (begin slowly then increase to medium speed.) DO NOT OVERMIX.

Butter and lightly dust a fluted cake tin or two to three loaf tins with flour. Carefully pour the mixture into the tins as to not pack tight and bake mid-oven for 1 hour 15 minutes or until golden brown and an inserted paring knife or cake tester comes out clean.

Another tip is to keep the oven door closed and check doneness only after the first 50 minutes. Let stand for 10 minutes and remove from tins. Serve simply with fresh seasonal berries and whipped cream.

 

CRANBERY MOSTARDA

This recipe pairs beautifully with a cheese board and holiday roasts.
Servings: Makes 1.5 quarts

2 12-ounce bags fresh cranberries
2 Bosc pears, peeled, cored and cubed
1 ½ tablespoons mustard seeds
2 teaspoons dry mustard powder
Generous pinch red chili flakes
2 pinches sea salt
2 bay leaves
2 cinnamon sticks
½ cup raw cane sugar
½ brown sugar, packed
1 cup full-bodied merlot
1 cup fresh apple cider

Combine everything together in a medium saucepan and cook over medium-high heat until boiling. Reduce heat and simmer partially covered, stirring frequently, for 25 minutes until reduced. Remove from heat and allow to cool uncovered. Store in a mason jar in the fridge until ready to use. Bring to room temperature and remove bay leaves and cinnamon sticks before serving. This can be made several days in advance.

 

Learn More:

Dec 132016
 
blogfamily

Lonni, seated, with her sister Mary Allen.

I was a college professor and nurse with my doctorate in education when I started having memory problems that were concerning me. Students had complained of inconsistent homework assignments, and my son Dan noticed that I was repeating myself in our phone conversations. Then one day while giving a speech in Washington D.C. about medical ethics, I totally blanked about where I was and why I was there – in the middle of my speech. That was a major turning point.

This was in 2014, and I was living in North Dakota. My physician acknowledged that she had noticed a change in me as well, and I was referred for neuropsychological testing. After completing those tests and a follow-up evaluation at Washington University in St. Louis, my diagnosis was confirmed as mild cognitive impairment (MCI).

Before I fully adjusted to living with this disease, the news was devastating to me. I couldn’t teach any longer; teaching completely depends on your ability to think on your feet and plan – things I was no longer able to do consistently. It was also devastating for my family, my always being so bright and articulate and then suddenly having speech pattern issues. The uncertainty of where “it goes from here” was overwhelming for them, but we have all adjusted and are doing very well.

My sister Mary and my son Dan and I are a team. We have made some heavy decisions – where I was going to live (I moved in with Dan), how we were going to gauge what I could and couldn’t do, what was safe, what wasn’t. We put plans of action into place. Sometimes it’s the little things, like how Dan calls me before he leaves work so I can start dinner then and not have the stove on all day.

danson

Lonni’s son Daniel.

I didn’t realize until I received this diagnosis that this support was always there. Not many people have a single 30-year-old son who would take them in and disrupt their life for the sake of their mother, but Dan does it without any regret or resentment. I didn’t realize how steadfast he and my sister were. They both instantly rallied and started taking care of everything I needed. I am in awe of them, and eternally grateful. I can’t imagine my life or going through this without them.

I have always done most or all of the cooking on Thanksgiving, but this year everyone brought something and I cooked the turkey and dressing. I knew Christmas would be a challenge, so my sister will be hosting Christmas this year. I have to change things around a bit to accommodate the fact that I’m not functioning at the same level I was previously. It doesn’t decrease the amount of joy and love we have at Christmas – in fact, we appreciate it more. My sister’s husband is also living with dementia, so we all take advantage of the time we do have together.

This Christmas, we will open half of the gifts on Christmas Eve and half on Christmas morning. We used to celebrate Christmas mornings with our immediate family but now we try to do more things together as an extended family. We are aware that we have more limited time and a need to be together. And actually, this arrangement has made it more fun!

I miss teaching a lot; I worked really hard to get the point where I could teach full-time. It was my goal for so long and I only got to do it for three years. Having said that, I’m a person who believes you just have to adjust your sails and go where the wind is taking you, even if it’s a place you weren’t planning on traveling.

And sometimes we do get to choose where we travel. This Christmas day, after we go to my sister’s home, my son and I are going to drive the 14 hours to North Dakota to see friends I previously taught with who I haven’t seen in two years. It’s people like them, my family and the friends who have stuck by my side who remind me that I am really lucky to have the time that I have. The life I am living now is not the life I planned, but I am living it.

To everyone living with dementia: do not put pressure on yourself to be what you aren’t anymore. Don’t force yourself to be excited or joyous just because it is the holiday season. You will feel better if you relax and be yourself and do what you can do. Don’t worry about what you can’t do anymore. Don’t try to live up to other people’s expectations. If you’re the person who has always cooked all of the food for the holiday gathering, it’s okay to be the person who does just some of it now. It is much more enjoyable than trying to be what you can’t be. Celebrate the season by being you, and giving what you can. Savor the moment.

About the Author:  As an Alzheimer’s Association 2016 National Early-Stage Advisor, Lonni Schicker would like to help reduce the stigma surrounding a dementia diagnosis and raise awareness for the value of an early diagnosis. She enjoys cooking and crafting and lives in St. Louis with her son Dan.

Learn More:

 

Nov 172016
 

My experience with Alzheimer’s started in 2001. My grandfather (my father’s father) died of what was first described to me as senility. I was in my early 20s and thought nothing of it; people in their 80s just forgot things.

It was not until 2009 or 2010 that I started to pay closer attention. We later discovered that my grandfather had had dementia. That’s when I also learned that my grandparents on my mother’s side of the family – both my grandmother and grandfather – also had a form of the disease. My living grandfather has early stage Alzheimer’s. My grandmother was diagnosed with senior dementia.williamwalk

This cause is important to me not only because my grandparents have the disease, but also because I am a financial advisor with Edward Jones, and I work with families currently living with this disease. Over the years, Edward Jones has helped many families work toward their financial goals, many of whom have dealt with Alzheimer’s disease or dementia.

It wasn’t until January 2016, when Edward Jones announced it was stepping forward to become the National Presenting Sponsor of Walk to End Alzheimer’s, that I learned about the many resources provided by the Alzheimer’s Association, including educational and outreach programs right here in my own backyard (Reno). I now actively share this information so that members of my community are aware that the Alzheimer’s Association is in local communities and here to help them!

Getting involved was surprisingly simple. When Edward Jones asked about helping with local outreach at Walk to End Alzheimer’s, I responded immediately. They put me in touch with my local Alzheimer’s Association chapter and offered me a position as a volunteer for our local Walk. In addition to helping the Alzheimer’s Association, this also gave me the opportunity to learn more about the resources available to help my grandparents and my clients.

As part of my personal commitment:

  • I’m now the mission chair for the Reno Walk to End Alzheimer’s.
  • I serve as the Edward Jones Northern Nevada regional coordinator for the Walk partnership. I’m proud of Edward Jones’ $4.7 million commitment over two years to support the mission of the Alzheimer’s Association. As part of that commitment, the Alzheimer’s Association will work with Edward Jones to create the Edward Jones Alzheimer’s Research Fund, a targeted effort to advance research toward methods of treatment, prevention and, ultimately, a cure at a quicker pace. The Alzheimer’s Association will provide education programs to associates at Edward Jones, and will work to ensure Edward Jones associates are equipped to share the resources of the Alzheimer’s Association with their clients.
  • I volunteer with the Community Foundation of Western Nevada Caregiver Support Initiative.
  • And, I volunteer with AskSara, a free contact service for individuals facing life changes, such as caring for aging parents.

Photo courtesy BMW Photography

I want my family to be safe and sound, and I want to tell my clients – many of whom have become friends – that to know that they aren’t alone when facing this disease. Thanks to what seems like fate, I’m proud to say I work with this great organization and plan to continue until there is a cure.

About the Author: William Palmer is an Edward Jones financial advisor in Reno, NV and mission chair for the Reno Walk to End Alzheimer’s.

Group photo courtesy BMW Photography.

Learn More:

 

 

Nov 142016
 

Today, there are an estimated 5.4 million Americans living with Alzheimer’s disease. And while most people associate the disease with old age, the fact is there are 200,000 Americans under the age of 65 living with it today. As with all forms of the disease, early-onset Alzheimer’s is a progressive, terminal disease, which cannot be prevented, cured or even slowed.

Since the onset can occur in people as early as in their 30s and 40s it often strikes during an individual’s prime working years, and as the disease progresses it prevents gainful employment. As a result, individuals are coming to grips with a devastating diagnosis all while losing employment and the salary and benefits that come with being employed. These individuals and their caregivers then must figure out how they will pay for their care.

Thankfully, since 2010 the Social Security Administration (SSA) has helped these individuals by adding Alzheimer’s disease to its Compassionate Allowances Initiative. The initiative identifies debilitating diseases and medical conditions that meet the SSA’s disability standards for Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). This allows for faster payment of Social Security benefits to individuals with Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia.

The Alzheimer’s Association actively worked with the SSA for the inclusion of early-onset Alzheimer’s disease and advocating on behalf of individuals with early-onset (younger-onset) Alzheimer’s disease. As the SSA was considering this decision, the Alzheimer’s Association provided comments to the administration and commissioner, held numerous meetings with SSA staff to advocate for the inclusion of Alzheimer’s disease and related dementias, and Alzheimer’s Association CEO Harry Johns testified during the SSA’s public hearing about the inclusion of early-onset Alzheimer’s disease. Since then we have worked closely with the SSA in support of the implementation of this Initiative nationwide and to educate our community about this benefit.

And since its implementation it has had a profound impact on the Alzheimer’s community, helping thousands of families including Tom and Julie Allen. Tom was looking for a way to help manage the costs of Julie’s Alzheimer’s care, since his retirement and two part-time jobs were not enough to cover the large costs of Alzheimer’s disease. Through working with the Alzheimer’s Association and the SSA he was able to secure for Julie the SSDI benefit.

Social Security benefits are very important to individuals with early-onset who are unable to work and have no other source of income. At the Alzheimer’s Association we hear from family caregivers about the challenges they face paying for care. As was the case with Tom, the financial complications and solution finding falls to the caregiver. That is just one of the reasons why we celebrate November as National Family Caregiver Month and we take time  to honor the 15 million caregivers for those living with Alzheimer’s disease.

To learn more about how SSDI works and if it may be available to you, visit www.alz.org/SSDI or call our 24/7 Call Center at 1-800-272-3900.

This blog appeared originally on the Social Security Administration website blog.  

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movementegge_2014-1

Learn More:

 

Nov 142016
 

We sat down to talk with Richard Lui, news anchor for NBC and MSNBC and long-distance caregiver for his father, who is living with Alzheimer’s. Every week, Richard travels coast-to-coast to be with his family.

Tell us about your father Steven’s Alzheimer’s diagnosis and how it came about.

luiwithfather

It began with a diagnosis of dementia. The interesting part is my Dad never had a great memory – it was something we joked about. However, what started to happen was much more extreme.

Dad is one of 13 children in his family, and at Christmas, his youngest sister Fannie pulled me aside and said, “I’m concerned, Steve is forgetting our names.”  He agreed he should get tested. This was about five years ago, and it resulted in a diagnosis of early signs of dementia. It wasn’t until about a year and a half after that that he was diagnosed with Alzheimer’s.

I’ve always traveled back to San Francisco from New York for family gatherings. During these visits, I was able to see moments in time — snapshots of my Dad, if you will — and I began to notice the differences in him. It was probably more nuanced for my mother, who lives with him, but I saw it, and now make the 5,000-mile round trip to see him once a week most months.


As a caregiver, how do you make this long-distance, long-term travel work with your schedule as an anchor and reporter?


The practice of consistently going back and forth helps me gather the information I need in a short amount of time. I try to stay with my parents when I come back so I can observe the nuances and changes…how it’s difficult for Dad to brush his teeth or walk down the block to get a haircut. Sometimes it’s hard to put on a strong face, but I do what I can to help my Mom, who is Dad’s primary caregiver.

From a professional standpoint, I am so thankful my supervisor understands the situation I am going through. When we sat down to talk about changing my work schedule, I found out she was also a long-distance caregiver who traveled to take care of her mother. She knew I had to start thinking about options immediately. Like a good journalist would do, she brainstormed options, and six months later our strategy was in place. My boss has been absolutely supportive of my need to go back west, having four to five days off and working two and a half days a week. That is very uncommon for very practical reasons of the way journalism works but NBCUniversal has been nothing short of amazing.

Your mother was born in China, and your father in San Francisco’s Chinatown. Have there been difficulties or cultural barriers in finding a support system or talking about the disease?

We are a multigenerational Asian American family, and each of us assimilates differently, just as any American family does in their community, city and social circles. When it comes to the way we handle my father’s diagnosis, each brings individual strengths. More broadly, Asian American and Pacific Islander (AAPI) families like ours take on responsibility of caregiving without thinking twice  – an unwritten and sometimes unspoken practice that family is number one. But interestingly, despite this core family strength, few talk about it, nor share best practices openly. That said, my Dad doesn’t fit the stereotype. He was always open to whatever had to be done when he was sick and the same is true with his Alzheimer’s.

One decision we made as a family was my Mom and Dad’s living situation. Instead of moving because of my childhood home’s dangerous stairs, we decided to remodel their house so my Dad wouldn’t be shocked by a strange living situation which could cause more loss of memory. Instead, we created a stairless ranch level apartment in their tall “Full House” type San Francisco home we all grew up in that would help Mom and Dad’s long-term living needs.

Interestingly, these are not topics we would typically talk about…long-term care, planning ahead…but because my father is so open, we were able to talk about it bluntly.

richardstevenHow has your profession helped you handle your father’s Alzheimer’s?

Taking a plane is second nature to me; it’s like walking out the front door. That is why, despite having the most demanding travel schedule of my siblings, going back once a week to help my parents is not a big deal. And as a journalist, I learned years back that in order to tell good stories I had to emotionally access parts of who I am that I wouldn’t have had to otherwise if I was not a journalist. I feel comfortable asking difficult questions about care facilities, financial planning and other sensitive topics. I don’t want to do it, but we need to.

How did growing up with a close family help you face the challenge of being a caregiver?

We’ve always been a tight-knit extended family. Twice a year, my father’s side of the family would go to the cemetery and burn fake money and leave food for my grandfather, along with his favorites – whiskey and cigars. At Christmas, we would have 90 people together – cousins, aunties and uncles all celebrating the holiday. From road trips à la the “Vacation” movies where we piled into the station wagon to see my Mom’s family in L.A., to gathering for Ching Ming, it was never explicitly said “you have to take care of your family” – it was simply understood. We were close, and we will always be close. It’s just how we are. Caregiving is an extension of that.

What are the tough moments you’ve faced since your father’s diagnosis?

There have been many emotional moments. Most recently my father has lost the ability to shave, and I helped shave him for the first time. He laughed and smiled and thanked me as I cleared his whiskers. As a young man, my father was the one who taught me how to shave my chin. So this latest change was symbolic. And it was saddening. But it was my honor, too. I want to be the one who shaves him every day – but I can’t.

What moments of joy have you found since your father’s diagnosis?

I find moments of joy every time I go home! My Dad is a joyous person, which is much different from his personality before the diagnosis. He was a pastor and couldn’t support the family on his salary, so he became a social worker to have a steady income, but that didn’t pay much either and he wasn’t built emotionally for social work’s noble but trying tasks. He cared too much and was often stressed.

As a social worker, he was forward with people and told them what they had to be prepared for. In a way, he was equipping himself to be the happy embracive person he is today. And there’s the silver lining. He accepts his diagnosis for what it is.

For my own part, I’ve had to accept Dad’s Alzheimer’s diagnosis spiritually and emotionally. There was a time when I would describe being with him like watching my father die in front of me. Now I see him being born again in front of me. Life is a stack of pancakes, and Alzheimer’s takes the top pancakes little by little until you’re left with none. But through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.

Your mom is your father’s primary caregiver. What has her experience been like, and what have you drawn from her strength?

Mom talks to one of her good friends whose husband also has Alzheimer’s. She also talks to some of her other close church friends who are also caregivers every couple of weeks. She has a support system but despite that, I know this road hasn’t been easy for her. In moments when she’s alone with my Dad and I am in the other room, I can hear the frustration of a person who had been steely, personable, forthright and honest her entire life. She comes from a golden generation of exceptional values, but I can sometimes see the crack in her armor.

I listen to and look at the other women (who I call aunts) that my Mom gets support from. The commitment they’ve all made is exceptional, without a squeak or a squawk. I wish I could draw just a little bit of that attitude and energy into my life and do something to the degree they do—it’s amazing.

When I am at home in San Francisco, I sometimes hear Mom speak to Dad in certain ways and I tell her that he won’t understand. What she has said is too much; it’s too complex. “No, no no….if I say it to him, he will listen,” she says with her endless amount of hope. And sure enough — sometimes he does. She doesn’t give up. She is a hidden hero. All caregivers are.

nycwalk

Richard Verdi, David Hyde Pierce & Richard Lui at the 2016 New York City Walk.

About Richard Lui: Richard Lui has had an illustrious career that has included roles in marketing, strategy and technology. Today Richard is a journalist and news anchor for MSNBC and NBC News and is known for his humanitarian charity work. He served as emcee for the 2016 New York City Walk to End Alzheimer’s.

 

Nov 102016
 

2016 marks the 5th year I have walked in Walk to End Alzheimer’s. This year, I was lucky to walk with friends and family, but there is one person I wish could walk with me – and I simultaneously realize that if she was here, I wouldn’t have the same compelling reason to walk. That person is my mom.

alexmag

When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50.

The once bold and fiercely independent woman I knew quickly became a stranger to me. At first it was the little things, like forgetting to pick me up from school, or getting confused on a drive home from the airport. Then one day when I was 16, she looked me in the eye and asked: “What’s your name again?”

The day of my graduation, my mom refused to get ready, insisting that the clothing my dad had laid out for her was “for children.” At the last minute, she changed her mind and decided to join us. On our way home, we decided to stop to get some dessert to celebrate. As we made our way to the table to sit down, my mom started yelling at my dad: “I’m not going with him! He hits me! I am not going with him!” A moment of silence followed as we decided what to do.

alexmomWith Alzheimer’s, there is this inclination to hold onto what is “normal.”

That night after graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” That night, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do. Unfortunately, there is nothing normal about what Alzheimer’s does to a person.

We didn’t have dessert that night. 

My family could feel the eyes of the restaurant guests on us as my mom continued to yell out, and all we could do was smile a little with tears in our eyes as we reassured her: “It’s okay. We’re going to home, and it will be okay.”

On October 3, 2011, my mom passed away.

After her 10-year battle, she finally got to rest. Although I can’t change the fact that my mom isn’t here  –  and I can’t help but be glad that she’s no longer in pain or scared – I refuse to accept that her fight is over. I am now the one who has to fight. One way I choose to fight is by walking to raise money and awareness for Alzheimer’s research.

So why do I fight? Why do I walk each year, and look forward to future Walks?

I walk in honor and memory of my mom. I walk because I don’t want to have to walk for my friends…and I don’t want them to have to walk for me.

alexwithfriendsI also walk because I long to see the first survivor at a future Walk to End Alzheimer’s. Although I feel energized as I meet other people who are as committed to eliminating Alzheimer’s as I am, I wish we didn’t even have to think about Alzheimer’s as a threat.

The only way we’re going to get there is if we continue to raise money and awareness to end Alzheimer’s for good – and keep fighting. This year’s Chicago Walk is over, but I’ll be back next year; I will keep walking, and I hope you will too.

About the Author:  Together with her family and friends, Alexandra Magiera participated in Walk to End Alzheimer’s in Chicago, Illinois. You can visit Alexandra’s Walk page here.

Learn More:

 

 

 

 

Oct 212016
 

Our mother came from Portugal after marrying our father in 1958. She didn’t know anyone and didn’t speak the language. She followed the love of her life and they raised a beautiful family. They taught me the meaning of true love, loyalty and dedication to family and friends.02_katie-mom-blog

Our father passed away in 2000, after 42 wonderful years of marriage. Although she had us kids and grandchildren as a distraction, she had a void that none of us could fill. She visited the cemetery every day and cried at the mention of his name.

In 2008, mom was diagnosed with Alzheimer’s and the days, months and years that followed were heartwarming and heartbreaking at the same time. Very early on she stopped talking about our dad and didn’t recognize his picture. That was a blessing but painful to think she could forget him.  Out of everyone, how could she forget him? They say God works in mysterious ways. Did mom get Alzheimer’s so she didn’t suffer without our dad?

Although she didn’t always know my name, she always knew who I was. She would often ask those around her “Where is my daughter?”  This will always be a comfort to me. Like so many children do, I took the time I had with my parents for granted. When we are young, we think we know everything and when our parents are gone, we realize they knew everything and we knew nothing.

We had daily help but my brother and I took turns caring for mom in the evenings and slept in the same bed with her for over seven years. She was home until she passed away on April 2, 2015. It was a sacrifice to leave our home and my husband in the evenings, but I don’t regret that for a minute. We had quality time we otherwise would not have had.  We laughed and cried and shared many special moments while she could still remember.

01_katie-mom-blogLater we repeated the stories she used to tell us over and over to her. She didn’t lose her smile, she didn’t lose the love for those around her, but she did lose her dignity. Mom was a very private person and I could count on one hand the times I saw her in her bra and underwear before Alzheimer’s, then suddenly I’m changing her diapers. We promised our dad we would take care of her and we kept that promise.

It’s time to take action against Alzheimer’s. We need to urge our public officials to vote in favor of increased funding for research so future generations don’t have to be affected by this terrible disease. I have a truly a wonderful life and I want to remember it all!


About the Author:
 Clara Stevens is the mother of actress and singer Katie Stevens. Read Katie’s blog, The Hardest Goodbye: A Granddaughter’s Story.

Learn More:

 

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