Due to an aging workforce, finding employees diagnosed with Alzheimer’s disease is becoming more common. While many people can remain at work in the early stages of the disease, each person’s situation is unique. Talk to your physician and caregiving team regarding how your current set of symptoms will impact your ability to work, and keep revisiting the conversation as your symptoms change. Depending on your particular job, you may need to transition out of work sooner than later, for example, if your job involves driving or utilizing skills that may be more challenging with Alzheimer’s.

If you are able to continue working, try to create a transition plan with your employer, perhaps reducing hours or taking a less demanding role. Educate your employer about the disease as you discuss your options, you may even want to bring a caregiver or advocate with you. You may find that your employer and even your Human Resources department may have had little training or exposure to the disease. Unfortunately, many companies that have stellar childcare benefits and support resources haven’t caught up with eldercare disease issues.

Research your employee insurance and health care benefits, and check out the information available from the Alzheimer’s Association. Some companies now offer EAP (Employee Assistance Program) elder care counseling which encompasses dementia. This resource may include caregiver referrals, benefits counseling and other assistance. Alzheimer’s disease is a disability under the Americans With Disabilities Act (ADA), so many companies must legally attempt to provide “reasonable accommodations” to keep you at work. The reality, though, is that at some point you will be transitioning to go on disability or retirement. Most companies provide short term disability insurance, and may offer long term care insurance coverage. COBRA may be an option for continuing health insurance coverage if you can no longer work. Regardless of your age, you may be eligible for Social Security Disability (SSDI), Supplemental Security Income (SSI) benefits, and possibly Medicare, through their “Compassionate Allowance Initiative” for people under the age of 65. Do you have the option to retire early? Can you take a loan from your life insurance policy or accelerate its payout benefit? All of this needs to be looked at.

Caregivers can help support their loved ones in the above planning process by educating themselves early-on regarding insurance, legal and financial decisions that need to be made. It isn’t easy to wade through; leverage your or your loved one’s EAP services to get support. If your loved one is still able to work, proactively providing them with memory tools may help. Someone who previously could easily keep appointments and details “in their head” may now need a calendar, post-its and a binder to organize their daily activities. If your loved one is comfortable with sharing the diagnosis with co-workers or clients, they might find that they can get some additional support from them.

Caregivers also need to think about their own employment situation. Research has shown that 66% of caregivers experience impacts at their work place due to coming in late, needing time off, etc. You need to do planning relating to your own finances. Can you afford to reduce hours, work at home or get a more flexible working arrangement?  You may be eligible to take time off via the Family and Medical Leave Act. Your company may offer dependent care flexible spending benefits, which includes Alzheimer’s/eldercare dependents.

Transitioning out of the workforce doesn’t mean sitting at home! Encourage your loved one to contribute in other ways, perhaps volunteering or taking on hobbies. It is important that they can continue to have connections and remain engaged. Recognize they may become sad, angry and confused. And you may feel overwhelmed. Ensure you get support and respite for yourself! Although difficult, it is also always important to try and live in the day. Don’t let anxieties about the future ruin the chances of having a good day today.

Para celebra el Día De las Madres le queremos contar un poco de la historia de nuestra mama.

Nuestra mamá nació en Chiltiupan, un pueblito en las montañas del Puerto De La Liberta. Nuestros abuelitos tenían una tienda y terrenos de agricultura. Mama Coro, nuestra abuela, se encargaba en el trabajo de la tienda y Papa Chuz en atender la finca y el ganado. Mamá es la hija menor de una familia de 13 hijos. Como la niña de la casa mamá se crio diferente a sus hermanas. Sus hermanas tenían que ayudar con el trabajo de la casa. Cuidando los hermanos menores, haciendo pan, queso, o bordando para vender. Nuestras tías nos cuentan de los pañuelitos que bordaban con corazones para vender en los bailes del pueblo. El oficio de mamá erra el trabajo de la tienda, atendiendo los clientes. A mamá le gustaba que la tienda estuviera alegre con música y cuando no habían clientes se ponía a pintar sus uñas.

La cultura Latina es dominada por el hombre, más en los tiempos cuando mamá se crió. Sus hermanos, todos fueron educados terminando sus estudios en la Universidad. Al contrario las hembra solo fueron a la escuela primaria o secundaria. Cuando Papa Chuz murió, a sus hijas no les dejo herencia. Sus pensamientos erran que a sus hijas, su esposo las tenían que mantener pero a sus hijos ellos tenía que mantener su familia. Gracias a Dios por su misma voluntad y por ser trabajadoras las hijas todas han salido adelante.

Irma y Victorino, 1963

Cuando mamá se vino para Los Estados Unidos a reunirse con Papá era el año 1959. Sus hermanos le suplicaron que lo pensara bien lo que estaba haciendo, en Los Estados Unidos iba a tener que trabajar. El primer trabajo que encontró Mamá era en Los Angeles en una fábrica de sándwiches. Para trabajar allí mamá se tuvo que cortar sus uñas y lloro. Mamá tenía una cárstica fuerte, siempre diciendo “Que no hay que darle el brazo a torcer.” Entre poco tiempo mamá y papá se movieron a San Francisco donde encontraron trabajo en una laundry. Mamá es económica y en 1963 había ahorrado dinero para dar de entre en una casa. Ellos compraron una casita en Sur San Francisco donde nos creamos.

Los recuerdos de nuestra niñez son de una casa con bastante orden. Mamá nos sacaba la ropa de escuela la noche anterior. Todos los viernes salíamos un restaurante a cenar. Los Sábados erra el día de limpiar casa, y los domingos el Día de familia. Los domingos íbamos a misa y después al parque, playa, zoológico, museo, o a visitar familia. Cuando mamá necesitaba ropa especial para una fiesta íbamos a las tiendas en el centro de San Francisco y al regreso pasábamos por La Misión a comprar pan dulce, queso, y plátanos.

Mamá nos ha dejado con una recesa de experiencias y memorias. Abajo van a encontrar los sentimientos de sus nietos e hijas:

Mi recuerdo manejando sobre el puente en el carro de mi abuelita. Mi hermana Major y yo nos sentábamos en el asiento de atrás en su Volks Wagon anaranjado. Inventábamos canciones y nos poníamos a cantar. Tengo esos momentos recordados vividos en mi memoria. -Jenina

Me hace falta que mamá Irma no me recuerda como su nieta Major pero encanto que se recuerda de mi como niña . . . Ella se ha olvidado de Melissa pero recuerda Mishi. -Melissa

Una de mis más favoritas memorias es de Mamá Irma cuando yo estaba en La escuela secundaria. Mamá Irma venía a visitar de El Salvador pasando unos meses en nuestra casa. Un cosa que siempre cocinaba erra pastelitos. Me encantaba cuando yo salía de la escuela y me tenía un plato de pastelitos esperándome. Me traía mucha alegría y por qué me gustaban tanto le traía alegría a ella también. -Tobias

Una cosa que siempre he admirado de mi mamá es su habilidad de perdonar y olvidar las cosas. Mamá nunca guarda rencor. Es una calidad muy importante de tener. -Silvia

La Señora Contenta

Algo que paso recién me recordó de la cárstica y el espirito de vida que todavía vive en mi mamá. Estábamos en la vanidad lavando sus manos. Mi mamá levanto su cara y vio una señora sonriéndose, era su reflejo en el espejo. Mamá empezó a platicar con la señora y le dijo, “Usted está siempre contenta. Me gusta la gente contenta, no es.” Mi mamá le demostró una cara enojada y se puso a reír. Mi mamá dio vuelta para donde yo estaba y me conto que esa señora siempre está contenta, le dije que no me gusta la gente brava. Demostrando me la cara que le dio. Nos pusimos a reír. Le responde, “Si mamá, la señora es muy simpática y tiene una sonrisa bonita. Diga le adiós y que la va ver otro día.” La tome de mano y salinos para la sala. Mis recuerdos son de su sonrisa. -Linda

The Happy Lady

With Mother’s Day this past weekend we wanted to share some of Mom’s story with you.

Mom grew up a merchant’s daughter in a small village at the summit of the Salvadorian Coastal Mountain range. The village is named Chiltiupan. Her parents owned a general store and farmland. Our grandmother, Mama Coro ran the store, while Papa Chus, our grandfather, focused his time in running the family’s agricultural land. Mom was the youngest girl in a family of 13. As the baby girl her life was different than that of her sisters. Her sisters had to help cook and make things to sell in the store; bread, cheese, or do embroidery work. Her sisters still talk about embroidering handkerchiefs which they would sell at the town dances. Mom on the other had worked in the store helping with customers. Mom would play music in the store in order to create an uplifting atmosphere and learned the value of engaging customers in conversation. When business was slow mom would polish her finger nails.

In Latin families there is a strong male dominate environment. During the time of mom’s up bringing this culture was even greater, for example: My uncles, the boys of the family, received an education. They all went on to earn University Degrees. The girls, my aunts, received only grade school education. When Papa Chuz, passed away he left inheritance only to his sons. His thought process was his sons would need to provide for their wife’s where as his daughter husband’s needed to provide for them. He left nothing for his six girls. With God’s grace the girls were all successful.

Irma and Victorino, 1963

Mom came to the States to join dad in 1959. Her brothers encouraged her to reconsider her decision. Her life in the States was going to be different; she would have to physically work. Mom’s first job was at a sandwich factory in Los Angeles, where she learned she had to cut her finely polished nails in order to gain employment. Mom mourned the loss of her finger nails but was determined to not give in to her brothers concerns. Mom has a strong will. Soon afterwards my mom and dad moved to San Francisco where they worked in a laundry. Mom was the saver in the family. By 1963, she had saved enough money to place a down payment on a house; a Cape Cod style home with a white picket fence in South San Francisco. This became the home in which we all grew up.

The things I remember most about growing up was a house with order. Mom would lay out our clothes the night before for school. We had dinner out every Friday night – my parents’ treat for a week of hard work. There were two restaurants which we regularly frequented: Luigi’s (for spaghetti) and Ponderosa (for steaks). Saturday was for house cleaning. My dad focused on the yard work and my mom on the inside of the house. Although, dad did share in many of the household responsibilities during the week. Dad was a better cook than my mom, teaching her how to cook. Sundays was family day. We went to church followed by a day at the beach, Golden Gate Park, the Zoo a Museum or visiting aunts/uncles. The only change to our routine was if mom was looking for a special outfit. We would to downtown San Francisco, Market Street, and go shopping. On our way home, we would always make a stop in the Mission District for pan dulce, cheese and plantains.

Mom has left us with many rich experiences and memories. Below you’ll find sentiments from grandchildren and daughters:

I remember driving in my grandmother’s car across the bridge. Me and my older sister would sit in the back of her orange VW bug and make up songs since she didn’t have a radio. Those memories & songs I still remember vividly. -Jenina

I miss that Mama Irma doesn’t recognize me anymore as her grown granddaughter but love the fact she remembers me as a little girl. She had forgotten Melissa but remembers Mishi. -Melissa

One of my favorite past time memories of Mama Irma was when I was in high school. Mama Irma would be visiting from El Salvador for a couple months out of the year. The one thing she would always make where her pasteles. I loved coming home and there would be a plate waiting for me. They put a smile on my face, and because I loved them so much it always put a smile on her face too. -Tobias

One thing that I have always admired about my mother is her ability to forgive and forget and not hold a grudge that a good attribute to have. -Silvia

The Happy Lady

A recent incident spoke to me of mom’s character and the spirit which lives loudly within her. We were at the vanity washing her hands. Mom looked up and saw a woman looking at her, the reflection in the mirror. Mom began speaking to the woman which was smiling back at her. Mom spoke to the woman in her broken English, “I like you. You’re always happy. You no.” Mom puckered up her lips and puffed up her cheeks in a demonstration of anger and began to laugh. The woman laughed with her. Mom turned toward me and said, “I told the lady she is always happy. She’s not one of those people who are always angry.” She showed me the face she had made to convey grumpiness, puckering up her lips and puffing out her cheeks. We both laughed out loud. I responded, “Mom, she is a happy lady and does have a beautiful smile.” Tell her we’ll come back and see her later. My mom said goodbye to the lady in the mirror and we walked hand in hand to the living room. My memories are of my mother’s smile. -Linda

If you have been diagnosed with Alzheimer’s disease, one of the many difficult decisions you will face is when to hang up your car keys. Driving is such a routine freedom and pleasure that for most people it is quite painful to think about losing that independence. But the disease impacts the concentration and quick reactions that safe driving requires, so needing to stop is inevitable. The question of driving – whether to continue and if so, for how long – needs to be evaluated as part of your ongoing health planning.

You’re likely to have conflicted thoughts about giving up driving, so acknowledge and share your feelings about it. Talk with your caregiver about how the driving decision should be made, balancing your desire for continued independence with the need for everyone’s safety. In the early stages of the disease, you may be able to simply transition your driving to be more limited, perhaps only driving familiar, short drives during the daytime. You could use a GPS tracking device to reduce a caregiver’s concerns.

Complete a driving contract, which can provide the names of the individuals you trust to help make the decision. You can ask that a physician or other 3^rd party be involved, or even that an independent driving assessment be done. Discuss your views of what should define “unsafe driving”and the decision to stop.  Ask that your caregiving team look for signs of issues over a period of time (versus one isolated incident). Measures such as frequency, patterns and severity of driving issues can quickly highlight safety concerns. Hitting the curb is one thing. Mistaking the gas pedal for the brake is another. If you do continue to drive, your caregiving team needs to monitor and evaluate your driving, and may determine you should stop even if you do not necessarily agree.

Caregivers need to keep the discussion about driving in the fore-front. Talk openly about your concerns, what observations you have noted from your loved one’s driving, and set the stage for the eventual decision to stop. Even with a driving contract this may not be easy. Appeal to your loved one’s sense of responsibility for the safety of others, reduce their driving needs and offer plenty of alternatives for them to maintain some independence as well as social outlets. Alternatives can include using delivery services or hiring a driver for prescriptions, groceries and other items. Establishing a circle of driving friends, neighbors and relatives is helpful in making the transition. Have friends visit your loved one at their home, or proactively arrange trips to social events to allow your loved one to retain their social connections. There are also many senior and disabled transportation alternatives available in the community, such as Outreach. Check out the ALZConnected online forum for help or referrals.

If your loved one pushes back on the driving decision, enlist the aid of a physician to write a prescription indicating, “No driving allowed.” If all else fails, you may need to take away the keys, or even disable or sell the vehicle. Don’t forget that it isn’t your loved one trying to be difficult. It is the disease impairing their insight and judgment relating to their driving abilities.

For more resources regarding the issue of driving make sure to visit the Alzheimer’s Association Dementia and Driving Resources Center.

I’ve also included this link to a great article written by retired lawyer and early stage Alzheimer’s patient, Chuck Warner. He gives some great insight on this sensitive topic. Read Chuck’s article here.

After two days of inspiration and education, advocates headed to Capitol Hill to meet with their respective legislators and ask for their continued support in the fight against Alzheimer’s.  Here’s how the meetings went for a few of the Northern California and Northern Nevada Chapter advocates:

View photos from the forum on Flickr and learn more about the sessions at alz.org/forum.

How do you sum up a day full of inspirational speakers, informative sessions, networking, and policy in just over a minute? Find out below:

View photos from the forum on Flickr and learn more about the sessions at alz.org/forum.

Over 900 Alzheimer’s advocates have gathered in Washington, D.C. for the 25th Annual Alzheimer’s Association Advocacy Forum. We have asked attendees from the Northern California and Northern Nevada Chapter to share their insights from the sessions they have attended. Here is what they had to say on Day 1:

View photos from the forum on Flickr and learn more about the sessions at alz.org/forum.

Dedicado a nuestra madre que celebro sus 82 años.

El viaje del El Salvador a San Francisco es largo, bastante tiempo para pensar. Cuando tomamos la decisión de traernos a mamá y papá a vivir con nosotros no entendíamos cuanto iba a cambiar nuestras vidas. Tampoco teníamos la realidad del impacto que iba tener esta decisión en nuestras familias. Que ingenuas herramos.

Por adelante teníamos muchas decisiones que discutir. ¿Cómo íbamos a encontrar a alguien que los podía cuidar cuando nosotras estábamos trabajando? ¿Cuál es el proceso para emplear a una cuidandera? ¿Con quién iban a vivir; en la casa de Silvia o la de Linda? Lo único que si sabíamos erra que los teníamos que cuidar. Ellos nos cuidaron cuando erramos pequeñas y ahora erra el tiempo de estar allí para ellos. Siguiendo la costumbre Latina de cuidar nuestros ancianos.

En ese tiempo mamá y papá no necesitaban mucha ayuda. Ellos necesitaban alguien que les prepara la comida, que los cuidara, y compañía. Lo que decidimos erra llamar a la Iglesia. Tal vez la Iglesia nos podía ayudar a encontrar una cuidandera. Silvia llamo a la Iglesia – y bendito sea dios, nos dirigieron a una agencia.

La cuidandera de mamá y papá nos calló como un milagro. Ella se llama Laura y adora a nuestros padres. A mamá le gusta que la gente sea melosa con ella y social. Laura es muy atenta y cariñosa con ellos. A mamá siempre le ha gustado vestirse bien y combinando los colores de su ropa. Laura le da estos gustos, hasta le pinta las uñas. Mi papá tiene otra clase de personalidad. A él le gusta escuchar la música de sus tiempos y sentarse a donde le dé el sol. Le encanta el pan dulce con una tacita de café. Una costumbre que su mamá le dejo; nuestra Mamá Chabela.

Después de unos meses que ellos estaban aquí con nosotros aprendimos que mamá tiene Alzheimer ’s y papá tiene Parkinson ’s. Dos enfermedades neurológicas. Cuando nos dieron el diagnostico no teníamos mucho entendimiento de las enfermedades. El consejo que nos dio el neurólogo, “Empiecen a buscar una casa de ancianos para que los cuiden.”

Los primeros dos años de tenerlos aquí lo pasamos si ningún problema. Pero cuando les empezó a desarrolla sus enfermedades sus cuidado se puso bastante difícil. A mamá le ha dado un síndrome que se llama “Sundowner.” Sundowner ocurre cuando empieza a bajar el sol. Los síntomas son preocupación, ansiedad, y en un caso violento. Mi mamá se pone muy inquieta y no puede dormir. Se sienta unos segundos, se levanta a caminar, regresa a sentarse unos segundos y empieza de nuevo. Hay noches donde pasa doblando y sacando la ropa de su ropero o de la cama, dejando a papá sin cobijas.

Una noche cuando estaban en casa de Linda y Patricio, mamá no podía dormir. Patricio oficio quedarse despierto para cuidarla. Como eso de la una de la mañana mamá se fue a costar y Patricio logro dormir. A las cuatro de la mañana Patricio oía un golpecito en la mesa del comedor. Se levantó a ver que erra, regresando a despertar a Linda. “Linda, Linda, despierta. Tu mamá. . .” Linda le contesto, “Patricio acuéstate. En la mañana me levanto a componer lo que ha hecho mi mamá.” Patricio encisito, No levántate ya. Linda se levantó y salió al pasío. Todas las sillas del comedor estaban en fila, como soldados, desde el comedor al baño. Linda fue a la sala donde encontró a mamá. Los muebles del comedor y la sala de visita los había cambiado de puesto. Linda le pregunto, “¿Mama que está haciendo?” La respuesta, “buscando un gancho de pelo. No sé a dónde se me perdió. Hija, ayúdame buscarlo.” Linda, le respondió que le iba ayudar a buscarlo en la mañana. “Vamos a dormir mamá.” Mama estaba bien cansada. Los ojos rojos y no estaba estable de pie pero aun así su mente no reconocía su cansancio. No podía dormir. Este era un extremo pero hay muchas noches cuando mamá no puede dormir. Hemos aprendido a prevenir cosas, como poner veranda de bebe que solo le dan acceso a su recamara y al baño. Pensamos que mamá está en el segundo nivel de Alzheimer ‘s.

La enfermedad de papá, el Parkinson ‘s también ha avanzado mucho sobre el último año. Papá ha perdido su movilidad. Ya no puede parrarse él solo. Le cuesta sostener su cuerpo. Uno puede ver que él le está pidiendo a sus canillas que den un paso, pero no le hacen caso. Papá ocupa una silla de rueda, pasando el tiempo sentado o acostado. A él le dan sueños vividos y alucinaciones. Una noche despertó gritando. Estaba teniendo un sueño que el volcán estaba prendido en llamas y que el niño se iba a quemar; en El Salvador hay muchos volcanes. Nos quedamos con el asegurándole que todo estaba bien.

Hay días que el cuidado de mamá y papá lo hace a uno sentirse agotado físicamente y emocionalmente. Nos hace pensar si estamos haciendo bien.

“Las noches son largas pero los años son cortos” – Gretchen Rubin

Somos dos hermanas haciendo todo lo posible para desfrutar del tiempo que nos queda junto.

- Linda y Silvia

English version

Two Voices, One Destiny: A Long Journey

This month’s blog is dedicated to our mom, Ermelicia, who celebrated her 82nd birthday.

When we boarded the plane from El Salvador to San Francisco we didn’t realize how much our lives would be changing.  Nor did we understand the impact our decision to bring mom and dad home with us would have on our families.  We were naïve.

There was so much we hadn’t discussed.  We didn’t have a plan in place for their care.  We had no clue how to go about finding a care provider.  We hadn’t even determined with whom our parents would be living.  We just knew we needed to care for them.  A Latino expectation; which we would never think to question.  After all, they had been there for us.

On the flight home we decided to call the church.  We had a strong faith based upbringing developing a belief that the church was always a great resource.  Just maybe they would be able to help us find someone to care for mom and dad.

At the time our parents were relatively low maintenance for their age.  What we needed was someone to keep an eye on them, prepare their meals, and provide them company.  We arrived on a Saturday night and on Friday morning Silvia called the local parish.  We were lucky; the church was able to help us.  In order to offset the cost of a care provider our parent’s home would be maintained as a rental.  Things were falling into place.

Our care provider has been a godsend.  Her name is Laura and she genuinely loves our parents.  Laura dots over mom, painting her finger nails every week.  Mom has always liked to dress well; color coordinating her attire.  Laura indulges her by helping her select her clothing.  Dad is a bit more laid back.  He likes to listen to music from his younger days and sit in a sunny spot.  Dad loves, pan dulce, pastries.  A habit he acquired from his mom, “Chabelita,” her formal name was Isabel.  We called her Mama Chabela.

Over time we learned mom has Alzheimer’s and our father has Parkinson’s.  We didn’t have a lot of knowledge about their diseases, entrusting their neurologist to guide us with their treatment.   The neurologist’s advice; “Start thinking about nursing home placement.”

Those first two years were relatively easy to navigate.  However, as their diseases have progressed it has become more difficult to care for them.  Mom developed Sundowners Syndrome.  Sundowners leads to increased confusion usually in the evening.  Mom becomes very edgy and antsy.  She is unable to be still for very long.  Mom will sit down for about 5 seconds, get up, walk down the hall, return, sit down and 5 seconds later the cycle starts all over again.  On really bad days she will not sleep at all.  Mom will pack and unpack the dresser drawers or remove the blankets from the bed and fold them, leaving dad in the cold.

One evening at Linda and Patricio’s house, mom did not want to go to bed.  Patricio offered to stay up and watch her so Linda could go to bed.  Around 1 a.m. mom finally went to bed allowing Patricio to get some sleep.   About 4 a.m. Patricio awoke to a steady tapping.  He got up, stepped into the hallway, and walked down to the living room.  There he found mom.  He quickly returned to the bedroom.  “Linda, Linda, wake up.  Your mom. . .”   Linda responded half asleep, “Honey, I’ll take care of whatever mom did in the morning.  Go to sleep.”  Patricio was insistent, “You have to get up now.”  Linda got up and walked into the hallway.  All of the dining room chairs were lined up, down the hallway and into the bathroom.  In the living and dining room the furniture had all been re-arranged.  Linda asked: Mom what are you doing?  “I’m looking for a hairpin.  I’ve misplaced it.”  Linda offered to help her find it in the morning, trying to get her to bed.  Mom fought her.  Mom’s eyes were bloodshot and she was unsteady.  Her body was tired but her mind wasn’t registering the exhaustion.  We’ve since learned to put-up a baby gate at night in order to restrict mom’s access to only the bathroom and bedroom.  We believe mom is at stage 2 of Alzheimer’s.

The Parkinson’s disease in our father has also aggressively advanced.  In the last year he has lost most of his mobility.  He can no longer stand on his own.  You can see Dad mentally willing his legs to move, they just won’t respond.   Dad is in a wheel chair and spends most of his time sitting or sleeping.  He admits his sleepiness never goes away.  Dad experiences vivid hallucinations and dreams.  One night he woke up screaming.  The volcano is on fire; El Salvador has lots of volcanos.  He was shouting the baby is going to burn; pleading for us to get the poor child to safety. We had to talk him down.  Reassuring him all was okay.  No one was going to get hurt.

Between caring for mom and dad some days can be emotionally and physically draining.  It causes us to question if we’re doing the right thing.

“The days are long but the years are short.”- Gretchen Rubin.

We’re two sisters, trying our best to make the most of our remaining time together.

Linda and Silvia

On April 22, volunteers from around the country will convene in Washington, D.C. for the 25th Alzheimer’s Association Advocacy Forum — the nation’s largest Alzheimer’s policy event. Since 1989, dedicated Alzheimer’s advocates have met annually to share their personal experiences, learn about legislative initiatives, celebrate policy efforts and urge elected officials to make Alzheimer’s disease a national priority. This year a record number of advocates are slated to attend. As the Association’s new volunteer ambassador to the office of Senator Dianne Feinstein, I will attend the Forum for the first time.

Expectations are high that the 25th Forum will make a meaningful difference in the fight against Alzheimer’s, and there’s good reason for optimism. Recent advocacy efforts have produced important results, chief among them the passage of the National Alzheimer’s Project Act and the release of the first-ever National Alzheimer’s Plan. The fight against Alzheimer’s was in the national spotlight earlier this year, when President Obama mentioned Alzheimer’s disease in his State of the Union address, underscoring the critical need for medical research to address Alzheimer’s and other dementias.

Raising awareness of the disease continues to be important. For example, too many people still don’t know that:

• Alzheimer’s isn’t merely inconvenient memory loss — it’s the sixth leading cause of death in America. People with Alzheimer’s don’t just forget their children’s names, they forget how to care for themselves, and in the latest stages of the disease, they even forget how to eat and drink. In 2013, some 85,000 Americans will die of Alzheimer’s disease.
• Alzheimer’s is the only disease in the top 10 causes of death without a way to prevent it, cure it or even slow its progression.
• Alzheimer’s threatens to overwhelm our health care system and our economy, costing our nation an estimated $203 billion annually, with government programs like Medicare and Medicaid shouldering over 66% of the tab. Left unchecked, those costs are expected to soar to $1.2 trillion (in today’s dollars) in 2050.
• Alzheimer’s takes a devastating toll not just on people with the disease, but on their families, friends and caregivers, who in 2012 provided 17.5 billion hours of unpaid care valued at more than $216 billion.

The Alzheimer’s Association, in inviting advocates to the 2013 Forum, acknowledged recent successes, saying, “We know that a common goal can, and will, create change, but there is much more to be done.”

I emphatically agree. My hope is that, looking back 20 years from today, we will be able to say that this Forum marked the pivot point in the struggle against Alzheimer’s — that 2013 was the year Congress, policymakers and citizens across the nation stood up and said: Alzheimer’s disease cannot be permitted to ravage our people and bankrupt our society; starting now, addressing Alzheimer’s is a top national priority.

This is not an impossible dream. Though this will be my first Alzheimer’s Association Forum, it is not my first health advocacy effort. In 1992, following treatment for breast cancer at age 35, I was among a group of Bay Area women who were alarmed at the accelerating rate at which women were being diagnosed with and dying from breast cancer. Borrowing a page from the AIDS advocacy movement, we decided to take action, and organizations such as Breast Cancer Action and the Breast Cancer Fund were formed. Similar groups sprang up in New York, Washington, DC and across the nation. Our goal was to raise awareness and incite a movement that would lead to the eradication of the disease. Our message, like that of AIDS activists engaged in a similar struggle, was: this disease is an epidemic that cannot be ignored; it must be stopped now.

Today, people are still being diagnosed with breast cancer and HIV/AIDS at unacceptable rates, and challenges remain in the areas of prevention and patient care. But through tenacious advocacy, remarkable progress has been made in reversing the trends that had been so terrifying. For example, between 2000 and 2010, deaths from breast cancer decreased 2 per cent, and deaths from HIV/AIDS decreased 23 per cent. By comparison, during the same period deaths from Alzheimer’s disease increased 68 per cent!

When we meet with members of Congress on the Hill later this month, we’ll share stories of how Alzheimer’s has affected us and our loved ones. This is especially important because, to a greater extent than other afflictions, Alzheimer’s robs patients of the ability to advocate for themselves.

But now, more than ever, we must turn those stories into action. Let’s demand that Congress make combatting Alzheimer’s disease an immediate priority by allocating adequate funding for research, patient care and caregiver support. (Approving the President’s 2013 budget request for $80 million for Alzheimer’s research and $20 million for care and support is a good place to start.)

Together, let’s act now to galvanize the national will, so we can look back on 2013 as the pivotal year in the struggle to free our nation from the grip of Alzheimer’s disease and reclaim our future. In 2013, let’s do more than make a difference. Let’s make real change.

Carly is a high school senior who is committed to the Alzheimer’s cause because of her experience with her Grandpa. She raised over $2,000 for Walk to End Alzheimer’s in Sacramento last year and has such a compelling story, I had to share it with all of you. I hope you’re as inspired as I am by Carly!

I am a firm believer that people are just a compilation of their experiences. Who you interact with and the memories you have form your character as surely as a thrower molds clay. In accordance with this belief, my childhood is composed of memories that have made me who I am, whether they be good or bad. Some of these events in my life have left such a huge impact on me that I can recall even the smallest details of that moment.

One such time was December 26, 2007. Only the day after Christmas and my family was hosting a larger party of people than we ever do over the holidays. The reason behind this addition to just the usual suspects was because my grandfather, Alfred Dejesus, or most commonly known to me as Papa, was dying of dementia. I remember that day with better clarity than any given day in the last week. It is a day forever imprinted on my memory.

Carly and Papa

My Papa had been bedridden for days by that point, and unresponsive for the past two. He laid in my grandparent’s bed, my mom and Nana cleaning him and trying to keep him as comfortable as possible. They kept a constant vigil around his bed for the day. As for myself, I had secluded myself in the back room for the day, avoiding the constant stream of crying family and the reality of what was happening. I was just thirteen, and not prepared to lose a family member as important to me as him. Eventually I realized that I too should say my last goodbye. We each got a few moments alone with him, so I was able to talk with some privacy.

I remember walking into that room, I remember the way it smelled and how dim the lights were. Sitting next to him on the bed, I got to really look at a man that has influenced my entire life. Sleeping like this, one could not see the way the disease had changed his facial expressions or the way his eyes went blank when he lost his grip on the world. Here all I could see were the laugh lines battling against his deep working lines that could not be hidden by his aging wrinkles. He was the same man that he had always been to me, a hard worker, skin as dark as tanned leather from his years working in his walnut fields and from the Portuguese blood. His hair was still thick and dark, on the same head that I used to tie pigtails into and clip flowers onto.

About 12 years ago, when I was barely six, my grandfather was diagnosed with dementia. I was still new to the world, and I grew up only knowing the man that the disease had left me. Anyone who knew him told me that my Papa was one of the best men they had ever known. He was quick and sharp, with a dry wit and an easy laugh. He was a loving father, a generous person and a smart business man. As a child, none of this was shown more obviously than by the simple gesture of bringing my sisters and me donuts every Saturday morning without fail. And when he was no longer allowed to drive, he would have my Nana drive him to the local donut shop to bring his little girls a morning sweet.

He lasted seven years with his disease, and in that time I had matured enough to see for myself the changes that overcame his body and mind. He was still the same man that everyone knew him to be, but his mind had betrayed him. It was like I was seeing my Papa through a layer of fog, he could emerge every once in a while in a smile or a story, but then he always faded away again, still there, just an outline of what he really was. Later into my life, I have come to realize what a special person he was. He was patient and forgiving, he never got mad at me and tolerated my abuse for hours by willingly letting me ride around on his back, or playing “monkey in the middle” with my sister and me. I never heard him raise his voice to anyone; he was respected and loved by everyone.

As a child, my self-declared profession was to be a doctor, “but not a doctor that works directly with people, but a research doctor. Someone who finds cures.” This was my mantra whenever anyone asked what I wanted to be from before a time that I knew that there was such a thing as a “doctor in research.” To this day I am convinced that my place in this world is helping the masses by researching such debilitating diseases like Alzheimer’s. My Papa inspired this drive in me, because if I can, I want to prevent another little girl from losing her Papa before he can see her enter high school. The town that I live in is largely a retired population, where Alzheimer’s is a huge concern to the community.

Carly and her team at Walk to End Alzheimers, Sacramento

In October of 2012, I had the opportunity to participate in the Alzheimer’s Association’s Walk to End Alzheimer’s. I created a team and raised over two thousand dollars to donate to the cause. For my Senior Project, I wrote a research paper explaining the necessity of respite care for the caretakers of Alzheimer’s patients. I am graduating high school this year, with a plan to enter the field of biology with the expectation that I will continue my education in the field of research in order to learn more about this disease that has impacted me so personally.

When I was in fifth grade, my family decided to make the move from our home in the Bay Area up to the city of Grass Valley, California. My parents and grandparents built a house on the property we had bought and moved my grandparents up in order to be with them for the remainder of his life. The last week of his life dozens of people came from states away to give their final respects to Papa, and he was surrounded by love and family when he passed. I remember one instance, years earlier when the family was out for dinner my Papa was approached by an old friend of his. My Papa was fully aware that there was something wrong with him, he knew that the disease was making him have deficits, but he tried to hide it the best he could. He knew that the man knew him, but Papa had a difficult time remembering the man and could not form his words well. Unaware of my Papa’s condition, the acquaintance jokingly asked my Papa, “What’s wrong with you? Are you stupid or something?”

My Papa was embarrassed of his inability to communicate better, but my father was livid; we thought we were going to have to hold him back. As a family unit, we were willing to do anything for Papa. Where many family members sometimes distance themselves from a sick or elderly loved one, my parents, sisters and I circled the wagons around him and cared for him through his best and worst. No matter how heartbreaking it is to watch a beloved parent and grandparent succumb to this disease, we never even considered leaving his side.

If I learned nothing from having a close family member affected by Alzheimer’s, it is that my family rallies together in a crisis and that family is more than just blood, it grew until it reached into every corner of our community, as everyone understood and supported us while we were managing our tough times. I remember that while my family has suffered from Alzheimer’s, it is a personal story for millions of people on this planet.

Looking at him that day, lying on his bed, I could remember just how much he had been in my life. He is an immense compilation of memories, he is the family that surrounded me in love, and for that he is part of me. Finally leaving the room, I bent over him and kissed his forehead. At the door I told him that I loved him, and I heard a muffled response of “I love you too, Baby.” He never spoke again. Just hours later he died, surrounded by the people that he loved and only after he was urged that it was time to “let go.”

− Carly Messex

Although there are occasional reports about a scientific breakthrough or positive legislation that’s been enacted, most stories about Alzheimer’s contain bad news. That makes me rejoice! Say what? That probably sounds perverse, so let me give you an example.

On April 4th, the New York Times’ front page screamed this headline: “Dementia Study Predicts a Surge in Cost and Cases.” Now, this is not news to those of us who have been following these issues for decades. We know that the cost associated with Alzheimer’s is skyrocketing; we know that the number of people with Alzheimer’s is projected to increase exponentially. But the main reason my heart does a little flip when I read such headlines is that – finally – Alzheimer’s is getting attention. And lots of it! And not just in scientific journals, but in mainstream media as well!

To a large extent, you have yourselves to thank for this. It’s your relentless efforts to contact your elected officials, write letters to the editor, talk to your friends and family about what you are going through as you chart the Alzheimer’s course; insist on high quality care; complain when you don’t get the services you deserve, are entitled to, and need; and so on! All this creates a groundswell that cannot be ignored.

Now, barely a week goes by when there is not some news story about, or related to, Alzheimer’s. And the article detailing the results of a new RAND research study, conducted by an economist and financed by the federal government, is important for many reasons. First, it mirrors (although its statistics are slightly different) reports generated by the Alzheimer’s Association regarding the huge, increasing cost and prevalence of the disease. Second, it stands with the Alzheimer’s Association and its tens of thousands of advocates, in stressing the urgency of this crisis. Third, it admits that the “tremendous emotional cost” of Alzheimer’s is simply not talked about.

It almost seemed as though the researcher, Michael Hurd, was shocked by his own results. This study shows that the 3.8 million people today age 71 or older with Alzheimer’s will balloon to 9.1 million by 2040. And, direct health care expenses for dementia were higher than both cancer and heart disease. Such expenses will more than double by 2040 to a range of $379 billion to $511 billion, from $159 billion to $215 billion in 2010. Dr. Hurd also recognized that the nature of informal care was both more intensive and constant than other chronic diseases.

It’s vitally important for all of these truths to be confirmed by an independent research group such as RAND, so I can only wonder whether the study will finally prompt this country to realize that the seriousness of the Alzheimer’s trajectory is something that requires immediate and bold action. The crisis must be embraced and real solutions must be found, today.

Dr. Hurd, an economist, says that economists can be “cold-hearted,” and admits his team could not capture the “full toll of the disease.” The paper did not include, for example, the tremendous emotional cost” of Alzheimer’s. Even he, as an economist, recognizes that the emotional burden must be put in the equation. Let’s insist that further studies do just that.