Mother’s Day is always a mixed bag for me. It has become a bitter reminder that my beloved mother is not really there anymore, even though she is right in front of me. She is a different person now with Alzheimer’s Disease. I love her no less, but she is not the same. I mourn the relationship we once had. All the conversations. All the little gifts she gave me. All the endless support for years and years.

You take all those moments for granted, and then suddenly they are gone.

My mother was born in Norway at the start of World War Two. She and her twin brother were only four months old when their mother died of a brain tumor — just a couple of days before the Nazis invaded and occupied Norway. My grandfather, overwhelmed with it all, decided to send the infant twins to live with their Aunt Ingrid and Uncle Willie on the west coast of Norway, while he remained in Oslo with their older brother. Maybe he hoped the twins would be far from the action of the war. Or maybe he couldn’t manage three children and his broken heart all at once.

Those first years growing up during the War were challenging but happy ones for my mom. She always thought of Aunt Ingrid and Uncle Willie as her mother and father. She considered Aunt Ingrid the kindest woman on the planet. But tragedy struck again and Aunt Ingrid developed cancer and died when my mom was only six. My mom had lost her second mother.

The twins were then sent back to Oslo to live with the father they barely knew and his new wife who became my mom’s new mother. My mom adored her and called her “Aunt Mother.” But the relationship between my grandfather and his second wife ultimately didn’t work out. When they split after a couple of years, my grandfather forbade my Mom to see his ex-wife. Mom, disobeying her father, would meet up with Aunt Mother in secret, but it was not the same as living with her.

Eventually, though, my grandfather found a new wife and this woman, “Lillemor” (Little Mother), became my mother’s fourth and last official mother, the woman I always thought of as my grandmother.

Mom told me that she had spent years looking for a mother wherever she went, and that this never stopped. So many women over the years had stepped up to be a mother to her, and each one had something unique to give.

Living through such trauma, many people would become jaded and lose hope, but my mother never did. Her greatest lesson to me has been never to give up. Accept what life has to give you, and find a way to make the most of it. She was cheated out of having the experience of growing up with one mother, so her response? She went out and found twenty other women to fill that role. This solution was neither better nor worse, it was just different.

Still, my mother knew she wanted something else for her own children than what she had gone through. She has always loved kids and so she made a commitment to be the best mother she could be — the mother she always wished she had had herself. I can say with utter certainty, that she most definitely succeeded there. I was her special girl always.

Before moving back home to take care of my mom, I took the time to think it through. I wanted to make the best decision. Sometimes there are decisions to be made where there is no clear answer as to what is right and what is wrong. This was one of them. I knew that my mother would never have wanted to be a burden for me. She wouldn’t have wanted me to give up my freedom and make huge sacrifices to my career just to come home to take care of her. No one would have blamed me if I had made arrangements for her to go directly into a nursing home rather than care for her myself.

But I did not want to do that. Caring for Mom has been a challenge, but it has also been an amazing life experience. I have had precious time with my mother that I would not have had otherwise. She is happy and thriving, which makes me very happy.

I came home because my mother had started wandering. She had been leaving the house and roaming the streets. People who found her would ask where she was going, and she would say, “I have to go home.” For me, that meant that even now, as an older woman in her seventies, she was still searching for her mother.

She was lost like a child and she needed a mother. I knew that I could be that for her. No one else knows her like I do. I am her daughter who has become for her the mother she never had. The mother who will never abandon her, no matter what.

I was cleaning out the attic the other day, and I came across some old baby clothes including a little pink dress I wore as an infant. When I showed it to my Mom, her eyes lit up and she smiled and said, “So cute!” I gave it to her to hold and she was so excited. You could see how happy she was to hold that little dress. Who knows what memories it awoke in her. Then she looked at me and struggled to say a few words. But she did. She said, “I want to save this.”

Yes, Mom. Me, too. I want to hold on to those fleeting moments. The memories of days gone by. And this moment here right now, a moment in time when she can still hold an object and think about it. And then, like a mother, tell me with words uttered from her own mouth what to do with it. Save this.

The Things We Do For Love: Mother’s Day was originally published in Amy Poehler's Smart Girls on Medium, where people are continuing the conversation by highlighting and responding to this story.

Last month, around 1300 people from all fifty States came to Washington, D.C. to attend the Alzheimer’s Association Advocacy Forum, which is the premiere event in the fight against this disease. The mission of the Forum is to train people how to advocate on behalf of Alzheimer’s disease so that they can then return to their communities and continue the fight there. The participants spend two days learning how to advocate, and then on the third day, “Hill Day,” they go to Capitol Hill to meet with their lawmakers to put their newly learned skills into action.

I decided to go check it out to see what people are doing to fight this disease. The event was sold out and it was easy to see why. The excitement and optimism in the air are motivating. For caregivers and people living with the disease, the opportunity to meet with others like them and together to take action to make a positive difference is absolutely irresistible.

“Like the Alzheimer’s Association, the Advocacy Forum got started around kitchen tables with caregivers, men and women who were concerned about their loved ones, who said the Government needed to do something about Alzheimer’s disease,” said John Funderburk, the Senior Director for Advocacy for the Alzheimer’s Association, “Twenty-nine years ago, the first advocates came to Washington. They pressed their lawmakers for increased funding for research, more programs for care and support. And it’s just grown, year after year after year since then.”

According to their website, the Alzheimer’s Association Advocacy Forum will help you to “begin to learn how to promote our federal legislative priorities with members of Congress and their staffs, both in Washington and back home.” If advocacy is something that interests you, it is a relief to know that the Alzheimer’s Association will help you to become a better advocate.

And the interest in advocacy has grown enormously in a short time. Funderburk affirms, “We’re excited because this Forum has doubled just in the last couple of years, and what we have seen is our numbers increase not just across the board, but the number of people living with Alzheimer’s disease attend, the number of young advocates who attend, the number of diverse advocates, and more and more women are getting involved and working peer-to-peer as advocates not only to engage their lawmakers in Washington, but also lawmakers in their State capitols and local elected officials as well.”

One of the highlights of the first day of the Forum was the “Roll Call of the States.” During this session, participants hear about the progress that has been made during the year at the state level. One by one a representative from every state in the country came up to the mic to give a brief report on what progress had been made back home. The tone was uplifting and there were cheers all around for the many success stories from the past year. And hearing just how much has been accomplished by the others gives everyone the encouragement they need to keep moving forward.

Funderburk hopes that what the participants get out of the Forum experience are “the skills and the tools that they need to become better advocates. I also want to make sure that they have a good sense of community about this Forum. We always say to our advocates when they come to Washington, DC: when they come to their lawmakers, that is incredibly important. Just as important is what they do when they go home. The next week. The next month. They stay engaged throughout the year, because that’s when real change comes about.”

While the first day was devoted to celebrating the year’s accomplishments, the second day was devoted to intensive training sessions. I attended a session for Young Advocates (more about this in my next article) and had had an opportunity to speak with Liz Hernandez, which you can read about here.

On the final day of the Forum, the participants went to Capitol Hill to meet with their lawmakers. That evening, everyone celebrated their accomplishments and honored distinctive public leaders at the “National Alzheimer’s Dinner.” This year, Maria Shriver was honored with a Lifetime Achievement Award for her enormous dedication and work raising awareness about the fight to end Alzheimer’s disease.

Getting involved in advocacy is very empowering. When I first learned that my mother had Alzheimer’s disease, my emotions wavered between shock and sadness. It would have been it is so easy to feel defeated by the disease and to wallow in misery. The way out of the feelings of hopelessness is to take your sorrow and your anger and channel it into something productive that will make a difference.

I advocate in the name of my mother, Love, so that her suffering will not be in vain. I know that if she were fully present, that that is what she would have wanted. She was a nurse and had made it her life’s mission to help people. I like to think that she is still helping people today through me. People living with Alzheimer’s disease cannot speak for themselves. We must give them a voice to bring about the change that is needed to end this disease

The Things You Do for Love: Alzheimer’s Association Advocacy Forum 2017 was originally published in Amy Poehler's Smart Girls on Medium, where people are continuing the conversation by highlighting and responding to this story.

Liz Hernandez, a correspondent for NBC’s Access Hollywood, was a featured speaker at the 2017 Alzheimer’s Association Advocacy Forum last month. Liz first became an advocate herself after her mom developed the disease two years ago, and she became her mother’s primary caregiver until she entered a full-time care facility. As Liz told the program participants, she was initially reluctant to talk too much about what was happening in her family in order to preserve the privacy of her mother and family. However, she eventually came to realize just how important it is to speak out. She is now actively involved in the Alzheimer’s Association, joining the “Celebrity Champions” campaign in 2016 and serving as a Key Spokesperson during Alzheimer’s & Brain Awareness Month. Smart Girls recently sat down with her to discuss the importance of becoming an advocate for Alzheimer’s disease.

Smart Girls: When you first became a caregiver for your mom, did you find yourself lost initially?

Liz Hernandez: Absolutely! There is no blueprint for this. There is no one to show you how it’s supposed to be done. You’re figuring it out as you go. But that’s why it’s so important to have a support group. I was very fortunate I had people take me under their wing that had been through this. The first time I attended an Alzheimer’s Walk, I understood that I wasn’t alone. You feel defeated at times. And then you meet with other people who have gone through the same journey and the fear subsides. You do a lot more then, once you are able to grasp that it’s going to be okay. For me, I was able to share my story and step up to advocate, because you don’t want people to feel that same fear or discouragement that you felt in the beginning.

SG: Alzheimer’s is often seen as an old person’s disease. How can we inspire more young people to get involved?

LH: Through more Forums like this with the Alzheimer’s Association. You meet so many young advocates, you start to realize that the people advocating are in their 20’s and 30’s and sometimes even younger.

SG: What words of encouragement do you have for those people who feel like everything surrounding Alzheimer’s is hopeless?

LH: This is a disease where people come together and they show their strength. They show their compassion. It’s building a community. And if anything, you can be a support to a friend, to a neighbor, to a sister, to a brother. You just never know.

And when you are creating a community of people that want to just be there to support each other, that’s a beautiful thing.

SG: What do you have to say to young women to get them involved in advocacy for Alzheimer’s?

LH: It’s very empowering because you want to be able to use your voice for good. We have to let [our government] know what it is that we care about. We feel sometimes that we don’t count or we don’t matter. But attending forums like this you realize that we do have a voice. Seeing so many people come together for something they truly care about, it shows you that we can make a big difference.

SG: What is your message for Latina young women and women of color about advocacy and Alzheimer’s? What is the best way to get involved?

LH: I always say the best way is through someone that you know. You never know who’s going to be affected. Alzheimer’s runs high within our communities. I found [others like me] just speaking to my girlfriends. Before you know it, someone knows someone who knows someone. And it’s important to rally behind each other. In the Latin culture, [talking about Alzheimer’s] seems a little taboo. But then you realize that there is strength and there is humility in speaking about it. Don’t be afraid to speak up. Especially, when it comes to knowing what the warning signs are. I wish I had known that. Right now, I share that with my girlfriends, even though they might never be affected by this disease. I make sure that I am constantly speaking out and talking to other people and informing them, through social media, especially.

Go attend a Walk. Go with your girlfriend. Go with a neighbor. Go with whoever. Be a support because you don’t realize how many lives you could be changing.

SG: How did becoming a caregiver change your life? How did it affect your career?

LH: I don’t want to say that it ever affected my career. It was taxing. It took a toll on me as far as energy. I’m so grateful that I had that opportunity. As my mother’s memories were fading, we were creating new memories. Memories that I will have for the rest of my life. And I’m so thankful. It’s such a selfless act to be able to care for the person who took care of you all those years, and it’s the greatest gift of love that you can give. I always say the most beautiful thing that you can give anybody is your time. And I am forever thankful. So really when I was being the caregiver, it was my Mom who was ultimately giving me the gift.

SG: What do you hope that people will take away from their experience here at the Advocacy Forum?

LH: A sense of community and empowerment. To know that we do truly have a voice and we can make a difference. And the more people that come together to help raise awareness to let our congressmen and women know that this is something we really care about and how it’s really affecting us and how it’s going to continue to affect us.

We have to show up for the people that we love. And we have to be their voice.

Liz Hernandez: How to find your voice and advocate for people living with Alzheimer’s disease was originally published in Amy Poehler's Smart Girls on Medium, where people are continuing the conversation by highlighting and responding to this story.

I had never had to care for anyone in my life before I moved back home three years ago. And then I had to care full-time for my adult mother with Alzheimer’s.

From the moment I came home, my mother relied on me 100% for everything: bathing, dressing, shopping, food preparation, house cleaning, et cetera. My mom was with me ALL the time and she clung to me for dear life.

Just try to imagine the terror that someone with Alzheimer’s must go through.

Initially, it’s just a forgotten name or misplaced word. But then the disease progresses and you forget more and more until eventually, the world doesn’t make sense anymore. You lose your past, but also your ability to plan for the future. You no longer recognize your own home and the people around you.

My mom must have felt so lost. But despite the confusion, she knew who I was, and most importantly, she knew that she could trust me. Often, people with dementia cling to their caregivers like infants cling to their mother. It’s the one thing that makes them feel safe in a scary world.

To this day, my mom calls out my name when she sees me or when I’m not there and she’s looking for me.

On the one hand, this neediness is very sweet. My mother and I were already very close. I love that she knows who I am and needs me. But it also quickly became a problem early on. For the first three months that I was home, I was with my mother 24/7. Wherever I went in the house, she followed. I could barely get a moment alone. Even when I went into the bathroom, she would be on the other side of the door knocking. It was too much for any person to deal with and I knew that I needed to get help.

Caregivers are stressed and they frequently burn out. The task of caring for an adult with Alzheimer’s is overwhelming and there is little societal support. They often take serious pay cuts in order to care for their adult ward full-time.

Most people do not have the finances in place to be cared for if they become incapacitated with Alzheimer’s. Caregivers often cannot afford to hire the help needed to care properly for their charge and, as a result, overwork themselves in order to care for a very sick person.

A lot of this happened to me. I lost work. I worried about finances. Life quickly became very stressful.

I was very naïve when I first became a caregiver. I didn’t realize just how alone I would be in this endeavor. Certainly, I have friends and family. Many of them are wonderful and caring people who really wanted to do everything possible to help me. But nobody could do what I really needed, which was be additional caregivers for my mother. There was no sharing those responsibilities with anyone else.

I was distraught and alone and there was no running away from the daily responsibility every minute of the day. I was so busy caring for my mother, I didn’t have the time to pity myself or to cry about it. I just had to accept it and move on. That’s why the stress gets to you. You don’t have the time to process it in a healthy manner, so it just eats you up.

According to a 2002 Stanford University study, “Alzheimer’s caregivers have a 63 percent higher mortality rate than non-caregivers. In fact, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.”

That’s a shocking bit of information that doesn’t bode well. I was determined not to become another statistic.

Not knowing who exactly to turn to, I finally contacted the Alzheimer’s Association. They gave me the help I needed to change things for the better and make it all manageable. I was reminded that many people have dealt with all this before and there are local resources out there that could help me. What a relief to know that I was not alone!

It was through the Alzheimer’s Association that I learned about adult day care. It was an affordable part-time solution that gave me the respite I desperately needed. I met with the director of the program and got to see what the facility is like.

Adult day care for people with memory problems is fantastic. Most programs run like child day care does, during working hours. The center where I took my mom is open from 8:30 am to 4:30 pm. I could drop her off for a full day or a half day and it only cost $8/hour (much less than a home health aide). The daily routine is well-structured with trained health aides and directors. A typical day included snacks, lunch, and a variety of group activities like games, arts and crafts, gardening, music, and holiday parties.

I had been worried that it would be a sad and depressing environment, but nothing could have been further from the truth. The space was bright and cheery, the workers were helpful and caring, and the other “clients” were warm and friendly. I couldn’t have found a better solution for my mom.

Adult Day Care is not for everyone. Every person with Alzheimer’s is different and no one care package fits all. My mom had always been very socially oriented, so a fun-filled busy adult day care was perfect for her. It’s important to know the person with Alzheimer’s and come up with a care solution that matches what they were like before struck with the disease.

The most important lesson in being a caregiver that I learned early on is not to be afraid to look for help. No one can do it alone. The trick to being a caregiver is finding the help you need.

The Things You Do for Love: You Can’t Do it Alone was originally published in Amy Poehler's Smart Girls on Medium, where people are continuing the conversation by highlighting and responding to this story.