May 022018
 

The Longest Day 2017 was truly one of the most memorable days of my life.”

Actress Amy Aquino, currently starring as Lt. Grace Billets on the Amazon series “Bosch,” is known for equally tough-as-nails characters she has brought to life on “ER,” “Being Human” and “Felicity.” She recently spoke with us about her deep familial connection to Alzheimer’s disease and how the color purple has inspired her participation in the Alzheimer’s Association’s fundraising event, The Longest Day, which encourages participants to select an activity they love — or an activity loved by those affected — to help end Alzheimer’s.

Amy, tell us about how Alzheimer’s disease has affected you and your family.

Six of the 12 Aquino siblings developed Alzheimer’s or dementia.

This disease has been a part of my life since my teens. My father had 11 siblings; half of those brothers and sisters developed Alzheimer’s or another dementia, including early-onset Alzheimer’s. The first relative I saw affected was my Aunt Rose.

Rose started showing signs of the disease in her late 50s, but neither she nor her doctors could identify what was happening; this was the early 1970s, and there was very little awareness of the disease. She lived in Philadelphia and my dad and another sibling living in the suburbs started getting emergency calls that she was wandering around the city. The whole family was traumatized, trying to figure out what was wrong with her and experimenting with various “cures”, until it was finally determined that Rose – like her father before her – had Alzheimer’s disease.

About 10 years later, one of my dad’s brothers was also diagnosed. Like Aunt Rose, Uncle Mike was brilliant, curious, vibrant and involved – all of Dad’s siblings were. Rose, my inspiration in gardening, lost her ability to garden, and Mike, an engineer, also lost his greatness to the disease.

Four siblings followed. Aunt Florence was fiercely independent throughout her life, building a long career in New York as an actress and playwright. Though she lived alone and had no children, she lavished attention on her nieces and nephews, and mentored hundreds of at-risk kids. Despite her having seen Rose through the disease, when she herself was hit with it she didn’t recognize it. Seeing her lose her independence – and how furious she was about being moved into memory care – was so hard to watch. As I watched her and the others grapple with dementia – including my own dad, near the end of his life— I realized that I almost couldn’t recall a time when I wasn’t witnessing some form of this disease. That is why I am trying to spread awareness of what Alzheimer’s takes away from both the person with the disease and the people supporting him or her.

You rocked your participation in The Longest Day last year. You were active on social media throughout the day, making blackberry jam with family and friends in honor of your dad and his siblings. Are you participating again this year?

I am definitely participating this year! I saw the first blooms on my blackberry bramble outside my kitchen window in March and I’ve been dumping the recent rainwater all over them. Last year I initially panicked about what I could do – then it hit me: I have a freezer full of blackberries that need to be made into jam! Since I learned gardening from Dad and his siblings, it was a perfect tribute. AND they are PURPLE! Last year I mailed out dozens of jars of jam to people who donated, and I’m looking forward to what this year brings.

I’m so excited about the Longest Day, I even came up with an idea I want to pitch to my neighbors, and anyone living in a warmer climate: LAVENDER. Not the color, but the plant. People all over Southern California are using lavender as an attractive and drought-tolerant landscape plant. In June it tends to be bursting with blooms that will eventually need to be cut back anyway. So what better way to raise awareness and reward donations than harvesting and sharing those beautiful, fragrant blossoms which, on top of it all, are Alzheimer’s purple!

How did you recruit people to participate in The Longest Day, and what was the day like for you, your friends and family?

Recruiting was as simple as sending out an email describing what I was going to be doing. My close friends and family have been aware of or have participated in jam making before, and were eager to show up and get purple. And I know that the promise of a thank-you jar of jam helped persuade a lot of people to contribute.

I had five people helping make jam in the morning hours and three midday; my young grandnieces came up from Irvine with their mom later in the afternoon and we made jam until early evening. We capped the day off with a celebratory dinner, which was a fantastic way to end such a special day. The next day I found a lovely note about the day that my niece Alyssa had drawn and left for me — it became the perfect thank-you card for those who contributed.

The Longest Day 2017 was truly one of the most memorable days of my life. It was a procession of wonderful friends who were genuinely so excited to come over and help the cause, and we all had a spectacular time. It felt very reassuring and uplifting to know how much this means to so many people. Not everyone I know is directly affected by Alzheimer’s disease, but they all completely understood how the folks around them were, and the love was palpable. Everyone wanted to be a part of it, and everyone loved getting their hands purple!

As someone who has seen this disease affect their family so much, what do you think someone should do if they suspect that someone they love has Alzheimer’s or dementia?

If you’re worried that someone in your life is affected, then there is probably a good reason. The first thing someone should do is contact the Alzheimer’s Association by calling the 24/7 helpline, then read everything they can on alz.org.

My best advice is to not be afraid, but also not to pretend as if it’s not happening. I think there can be a tendency, when you don’t know what’s going on, to get angry or frustrated with the behavior. You may say things like: “I just told you that,” “Why didn’t you show up?” and “Why do you keep losing your keys?” That, obviously, isn’t helpful. Once you receive a diagnosis, the Alzheimer’s Association will be your best resource for the next steps you need to take.

Don’t put your head in the sand; don’t make assumptions. Addressing this disease directly and putting plans into place may help avoid something terrible from happening, like someone wandering outside of their home and getting lost. This disease is only going to get worse for my generation; if we all try and make a difference, I know we can change that together.

You speak about these strong people in your life who were lost to Alzheimer’s, who were so smart and fierce. Is that how you feel about the characters you play, such as Grace Billets?

I am grateful to still be playing strong female characters that people can look up to. It’s a privilege at this time in my life to have the role of Lt. Grace Billets, Harry’s boss on Amazon’s “Bosch.”

She is like me and so many women I have known – layered, deeply complicated – successful at what she does but still capable of screwing up. No one is perfect. We are just human.

The challenge of Alzheimer’s, for the person with the disease and their loved ones, is losing control of much of your life, but finding a way to continue living it. The drama of season four centers around this as well; I’m excited to see season four. My character is having to take command – temporarily –  during a very dangerous and tumultuous time in her division. Meanwhile, Harry, who is still her subordinate as well as her old friend, is going through emotional turmoil makes him withdraw more than ever, and is pushing him toward a possibly disastrous mistake.

With Alzheimer’s, so many things seem like they are unsurmountable – but if you call on all the resources available, in your community and in yourself, you can find a way through.

So whether it’s jam-making, a family day at the beach or a marathon, everyone can do their part to help end Alzheimer’s on The Longest Day. Just make sure to wear your purple – even if it’s on your hands!

About Amy:  Born in New Jersey and raised in Philadelphia, veteran actress Amy Aquino currently stars in the Amazon hit series, “Bosch.The series returned for its fourth season in April 2018, and has already been renewed for a fifth. 

Graduating with a B.A. in Biology from Harvard University, she went on to earn her MFA at the Yale School of Drama. Aquino then split her acting career between New York and L.A., doing TV, film and theater.

Aquino lives in a 1915 Pagoda-style bungalow in Hollywood, which she and her husband, financial advisor Drew McCoy, restored and had landmarked. She is active in L.A.’s historical preservation movement, helping establish historical preservation status for her Sunset Square neighborhood, and being appointed by the mayor to its Historical Preservation Overlay Zone Board. She’s also a director of Arts for LA.

 

 

Mar 082018
 

Lead singer Patrick Miranda of the alternative rock band Movements is familiar with Alzheimer’s disease in more ways than one. As a child, he saw the disease in his own family. More recently, he has seen how the disease has impacted the family of his girlfriend.

We sat down to talk with Patrick about how his experiences and the lack of conversation about Alzheimer’s and dementia in the music community led him to write “Deadly Dull,” a song that tells the story of a couple – a wife who died of Alzheimer’s and her husband, still living with the disease.

This is the story of a man that I know
A man with a heart of gold
But a body becoming weak
And a mind that let him go

This is the story of a man and his wife
And how she died of that same disease
How he stayed with her after her spirit left
But he won’t remember her death and

It’s a deadly dull
Like a sword stuck in its sheath
A mind once sharp and full
Now clouded and diseased

What’s it like to be erased every time you fall asleep?
Waking up as a clean slate without a sense of reality?
And will I end up the same way when I grow old and turn to grey?
As time leaves me behind to fade away, away

 


Tell us more about your connection to Alzheimer’s disease and how the Movements song “Deadly Dull” relates to your experiences.

I was about eight years old when my grandmother passed from complications of Alzheimer’s disease. Although I don’t have a clear memory of everything that happened, I do remember going to see her at her nursing home. She would consistently ask my dad, “Where’s Ruben?” “I am right here, Mom,” he would say. Ruben is my dad’s name.

I don’t think the reality of the situation really hit me as hard as it would have if I had understood more about it at the time, or if I had been a bit older. I didn’t have another direct experience with the disease until I met my girlfriend’s grandparents a few years ago.

At that time, my girlfriend Alexis and I were in a long-distance relationship for about three months – she would come see me on tour, we would meet up where and when we could – and I was going to meet her family for the first time in Florida. The day I arrived, Alexis said, “I hate to do this, but there is somewhere we need to go.” Her beloved grandmother was on her deathbed.

Both Alexis’s grandmother and grandfather had Alzheimer’s, and when her grandmother passed, the whole family and I were there with her. It was really heavy. I had never experienced anything like that before; I never saw someone die in front of me.

It was even more heart-wrenching because Alexis’s grandfather didn’t know what was going on. He couldn’t understand why Alexis’s grandmother, his wife of more than 50 years, wouldn’t wake up. As soon as we left the hospice facility, he was asking about her again, because he had already forgotten everything that had happened that day. For months, he had to learn that his wife had died, over and over again, day after day. It was crushing.

Our song and video “Deadly Dull” is about that experience. That hit me really hard, and I wanted to talk about it in order to help myself and to raise awareness. Alzheimer’s isn’t really talked about much in the music scene, and I wanted to open up that conversation.

Have you spoken to any of your fans about their own connections to Alzheimer’s, and the message of the song?

I have had more people come up to me who can relate to “Deadly Dull” than any song I’ve written in my life! It could be two or three people per show or sometimes lines of 20 to 30 people who want to talk about their connection to Alzheimer’s. It’s amazing and scary to see how so many people know what it’s like to go through the realities of this disease. The reaction that fans have has been so important to me. They thank me for writing about the disease, and they really appreciate that we are addressing the topic and being open about it.

I often have people tell me that one of my songs got them through a difficult time, but this song in particular is sticking with people. The truth is that this is one of the most important messages we’ve put into a song. Beyond the younger generation, which makes up much of our fan base, I’ve had parents who have brought their kids to our concerts and thank me for “Deadly Dull” because of their own experiences with the disease. The message of the song transcends the barriers of age, because, sadly, so many generations know what it’s like to have family member with dementia. I don’t think Movements has another song that quite does that.

What do you want fans that haven’t experienced Alzheimer’s directly to know about this disease?

A lot of people don’t understand the depth of the disease. I’ve encountered so many people who still seem to think that it’s a disease that just makes you forgetful – minor things like misplacing one’s keys. There are also people who seem to accept it for what it is and figure that there is no cure, so “Oh, well,” there is nothing we can do. Our band hopes that instead of turning away from the disease, people will raise funds towards research.

I want people to understand that Alzheimer’s is more than the misconceptions. My own hope is that we will one day find a cure or effective treatment. It’s very possible that any one of us can lose every sense of the person we are to this disease. We are all susceptible to becoming a shell of the person we used to be, all of our collective years of memories of love … gone. It’s a scary thought, but we can do something about it.

Has this experience – writing and performing the song, making the video, heading out on tour – been cathartic for you?

This whole ride has been a healing process for me. When I write music dealing with heavy topics, which typically focus on my own anxiety and depression, writing a song helps let it go. I hate talking about my feelings, and I sometimes bottle everything up until I want to explode. Being able to put all of those negative or sad emotions into a song is a type of therapy for me. I have the power to help myself get through those rough times I am going through.

Growing up, sad music that focused on the heavier topics of life actually ended up making me happier than happy music. There is solidarity with artists who write this kind of music, and although not every story has a happy ending, my music helps me communicate with people who also have a hard time talking about these topics. There is nothing more therapeutic than knowing you are not alone.

When I look my at my life and all the amazing things I’ve been able to experience with my music and all the connections that I’ve made with people, it’s hard to think about  a day when I may not be able to remember all of that. It really hurts. I want people to understand the complexities of Alzheimer’s disease and that anyone can join the fight just by educating themselves about the disease. Our band knows that it’s more important than ever to spread awareness in the community, any way we can.

About: Movements embarks on their Feel Something tour in March and will be touring the U.S. and the U.K. through the month of May. Select shows will have materials available about The Longest Day, the Alzheimer’s Association summer solstice event that allows participants to select any activity they love — or an activity loved by those affected — to help end Alzheimer’s.

 


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Feb 222018
 

I washed Mom’s hair today. What a mess!

For some reason, Mom, like many people living with Alzheimer’s, does not enjoy bathing or showering. Perhaps it is the overwhelming number of tasks associated with morning rituals that someone with Alzheimer’s can no longer remember how to do or what order to proceed in. I imagine Mom has a blank space in her memory when she’s asked to wash. And not being able to do it herself undermines her sense of accomplishment and control when she realizes she is dependent on someone else to assist.

Mom doesn’t know the difference between a skirt, a bra, and her nightdress. She can’t adjust the water temperature in the shower. She forgets to use soap. And she most certainly won’t put her head under the water.

When invited to shower, Mom often says she has already showered. The argument to convince her that she hasn’t or that she needs to wash often ends in rage and frustration, not only for Mom but for myself, my dad, and Sahlee, our caregiver. Or, Mom tells us she doesn’t feel like showering today. It does no good to remind her that she hasn’t showered since yesterday, because she of course she can’t remember. Suggesting she smells is even worse—how insulting!

Someone must be with Mom while she showers. And we must be there with the understanding that we may get wet.

When we can convince her to shower, usually every day, but not always, Mom has on occasion entered the shower with her underpants on. Trying to removing sopping wet pants from an incalcitrant individual is not an easy task.

Showering regularly can prevent body odor and urinary tract infections as well as funguses and rashes. We’ve learned, though, that the daily battle to get Mom in the shower can be relaxed on occasion.

This still leaves the problem of Mom’s hair. If we can convince her to wash it once a week, we’re lucky.

Today, Sahlee tried to convince Mom that we had a wedding to go to, but Mom wasn’t hooked by that idea. She often rambles during the day about the children or people she must see, and I wonder where in her memory she is on these occasions. I don’t think her self-references include beauty preparations for outings. I’m wondering where she sees herself most often. In her mother’s house? A young, independent secretary? A newly married woman? What has she done or accomplished in her life that might lend itself to needing to wash?

Perhaps if we couch it in terms of health issues she might be more amenable to our sitting her on a chair in the bathroom with a towel draped on her shoulders.

In any case, wetting her hair and massaging in shampoo was the easy part. But she would not look up or tilt her head back in order for us to rinse it out. We had her stand up and bend over the bathroom sink instead. That worked until she realized that there was water pouring down her head and she took a few steps backwards. Lots of water ended up on the floor, on our shoes, and on our clothes. Most of the shampoo came out, but not all of it.

Mom was upset but not angry. She even agreed to dry her hair and style it with her brush.

And so to next time. There are many articles online about the benefits of non-washed hair. Can I swallow that advice? Will Mom’s hair become lush and full with little to no washing? Or will she end up with dreadlocks?

I think I’m going to invest in dry shampoo. Yes, it’s a real thing. Maybe we’d be less wet on that ride.

As always, entering my kitchen is a relief from the stress of caring for Mom. With Purim happening this week, I wanted to make something that reflected the holiday. Purim is the celebration of Queen Esther saving us from the genocidal plan of King Achashverosh’s evil minister, Haman. There is a legend that Haman wore a three-cornered hat; to commemorate his downfall, we eat three-cornered pastries. Generally, these hamentashen, or oznei Haman (Haman’s ears) as they are called in Hebrew, are sweet, cookie-like desserts. The hamentashen I made are cheese-filled and best served with tomato sauce.

Purim Calzones

This Italian pastry is generally made as stuffed half circles of dough that is crimped at the edges to hold in the stuffing. I’ve made them here as savory oznei Haman or hamentashen specifically for Purim. Enjoy!

Dough

3 teaspoons yeast
2 tablespoons date honey
2 cups warm water
5 to 6 cups flour
2 teaspoons salt


Filling

1 250 gram (8.8 oz.) container cottage cheese
1 250 gram (8.8 oz.) container white cheese (gvina levana)
¾ cup grated yellow cheese
½ cup grated parmesan
3-4 cloves garlic
1 large onion, chopped
1 tablespoon olive oil
2 cups fresh spinach
Pinch nutmeg
Salt and pepper to taste

 

Directions:

  1. Proof yeast by placing in bowl with date honey and warm water. Let sit up to 15 minutes until yeast begins to react.

  2. Add remaining ingredients and mix with fork until a stiff dough starts to form. Knead with hands for a few more minutes—adding more flour if dough is very sticky—and place in a warm location to rise for one hour.

  3. Meanwhile, sauté garlic and onions until onions become translucent. Add spinach and cook until wilted and dark green. Remove from heat.

  4. In a large bowl, combine cheeses and pinch of nutmeg. Add cooked spinach, and salt and pepper to taste.

  5. Roll out dough on a floured surface until about ¼ in thick and cut out circles by using a cup or bowl with a wide diameter. (I used a bowl that was 15 centimeters in diameter, about 9½ inches.)

  6. Place one heaping tablespoon (plus more if it fits) of filling in the center of the dough circle.

  7. Moisten the edge of the dough circle with water.

  8. Gently lift circle edges above the filling and pinch together so that a triangle is formed. Pinch together the remaining triangle edges.

  9. Place on a baking sheet covered with baking paper.

  10. Brush finished oznei Haman with egg.

  11. Poke or cut small holes in the dough so that steam can be released.

  12. Bake at 450° for 20 minutes until dough is crisp and browned.

  13. Serve hot with tomato sauce.

This recipe is adapted from the Moosewood Cookbook by Mollie Katzen.

 

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. Her book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, will be published next year by Black Opal Books. 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. You can find Miriam on Facebook at https://www.facebook.com/thelostkichen/.

 

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Jan 022018
 

Actress Lois Smith’s face is one film buffs instantly recognize. Whether it’s a standout performance in a television series (“The Americans,” “True Blood”) or a memorable turn in a major motion picture (“Minority Report,” “Twister,” “East of Eden”), hers is a talent that has endured over six decades. But one wouldn’t guess that Smith recently celebrated her 87th birthday, or that she would post her first tweet that same day. She keeps people on their toes, radiating an energy more associated with someone half her age. When the Alzheimer’s Association sat down to speak with her about her performance and experience filming “Marjorie Prime,” she had been to several cities in one week and was on her way to Philadelphia to enjoy the holidays with her daughter.

Set approximately 30 years in the future, “Marjorie Prime” is about a woman, Marjorie, (Smith) who uses a service that provides holographic recreations (or “primes”) of deceased loved ones. In this case, it is a younger version of Marjorie’s husband Walter (played by Jon Hamm, in his own prime) who helps her rewrite memories while she is experiencing symptoms of dementia. Lovely to look at and always attempting to learn more about Marjorie and Walter’s lives together, this technological companion still can’t quite live up to the real Walter, even though Marjorie contemplates the fact that he might remember more of her life than she does.

The film — which touches on topics from grief and loss to the power of memory — is based on the 2014 Pulitzer Prize-nominated play of the same name. Smith starred in both the Los Angeles and New York stage productions of the piece. Please note that there are film spoilers in this blog post.

One element that is so touching about the film is that although it is set in the future and has sci-fi elements to it, it’s also a study of times gone by, and how people grapple with grief in different ways. What drew you to the play originally?

This story is a story about humanity. I feel like the film is sadder than the play given the difference in tonality between the play’s director (Jordan Harrison) and Michael Almereyda, the director of the film. The film has Michael’s name stamped on it; in some ways I think it’s more languid and less humorous than the theater piece was. This shift in the mood and changes to the script made the process enormously interesting — and challenging.

There is a scene early in the film where Marjorie asks Walter to rewrite a “scene” from their life: the night he proposed. That evening, they were watching the Julia Roberts comedy vehicle “My Best Friend’s Wedding,” but Marjorie reimagines that they watched the film classic “Casablanca” instead. What kind of comfort does Marjorie get from that moment?

Marjorie receives great pleasure from reimagining her own memories. It gives her a true sense of power over her situation. Think of that power — you can decide what you’d like a moment to be like, instead of what it really was. Imagine the possibilities. With help from the prime, she can do that.

What scene in the film was the most interesting to play?

Marjorie is a person who gets a great deal of enjoyment out of life; she’s quite flirtatious, even with her doctor, as her daughter wryly points out. I really liked playing with those qualities of hers.

I really love the scene with Marjorie Prime and her daughter Tess. (Marjorie Prime is the hologram Marjorie that Tess, portrayed by Geena Davis, engages with later in the film.) That scene was so central, so key to the film. It was of great interest to me, playing with the dynamic of that not-quite mother-daughter relationship and its learning curve. It was a delight working out how the characters find their way through it.

Marjorie Prime is — in a certain way — programmed to be the true Marjorie. But there are other elements she has about her that the true Marjorie did not have, like increased empathy. That empathy was a quality that Tess needed so much in those moments when she was struggling with the reality of losing Marjorie. That scene was truly great fun to play.

In the film, Marjorie is a former violinist, forced to give up her passion due to arthritis. Was the connection between music and memory in the play strong as well?

Michael Almereyda was very keen in making a contribution to the film’s story in that way. There was certainly much more music in the film than the play.

He took the cue of Marjorie’s prowess as a violinist to introduce a variety of new pieces which paired beautifully with the composed music by Mica Levi. The score is so powerful and so present, and I loved the places in the script where the new music introduced. Music played an important part in Marjorie’s life, as it does in all our lives, and the way she and Tess engaged with different types of music highlighted the difference in their characters. (Tess sits and reflects while The Band’s “I Shall Be Released,” written by Bob Dylan, is played, while Marjorie enjoys a piece performed by the New York Philharmonic.)

There is a vast difference between Marjorie, who is having issues with her memory and being combative with her daughter, and the digital Marjorie Prime who is so eager and in the moment. How did you approach playing Marjorie Prime, and what characteristics defined the prime for you?

Their demeanors are so different; the primes are so ready to learn and to please. When we began the first production of the play, it was clear that the author intended the additional empathy from the primes. Real people have lives that are full of conflict, especially between family members. The primes don’t come from this place of conflict. Their purpose is one of helpfulness; to be of help to the person they are paired with is of utmost importance.

On the other hand, the primes need to hone the characteristics of the person they are supposed to be, and still have to come forth as a convincing version of the person. It is a double collection of traits and behaviors filtered through a sense of generosity. The main thing about the primes is that they find that learning curve so interesting, and you see them stumble and make mistakes along the way in their portrayals.

As we talked about, this film focuses on the concept of memory — the good, the bad, the ones we may not remember quite the way they were. What do you think of the connection viewers and critics are making between the film and dementia?

When someone first brought up the connection between Alzheimer’s disease and the film, I didn’t see it as the subject of the movie, and it certainly isn’t. It does seem obvious, of course, that the connection would be made, as this topic is of such importance and of a lot of interest to people, whether they are curious about the disease, caregivers for someone with Alzheimer’s or dementia, or in the early stages of Alzheimer’s themselves.

For Marjorie, the things she has trouble remembering are not necessarily a central aspect of her life. In a certain sense, the film and her experience are more about memories lost and found, and not a clinical study in memory. But the connection is there, and the conversation is one that I’ve been enlightened about. Memories serve such an important role in our lives, and performing a piece like this is so rewarding.

What was it like for you to work on this film after performing in the play in both Los Angeles and New York city? What has the awards buzz surrounding your film performance been like for you?

This was a low-budget film that blossomed from a stellar play. The chance to make a film and continue in this role is something I am so grateful to have had happened, especially having another lovely cast come together — Geena Davis, Jon Hamm, Tim Robbins, to name a few.

I didn’t even turn my mind to the thought of winning awards, as I didn’t see this as any sort of traditional “Hollywood” project. I’m just happy that the film’s momentum has been strong and seems to be building towards the idea of it being award-worthy. To be honored is certainly lovely. I recently received a lifetime achievement award, which I admit was slightly off-putting — apparently I’m a very old person!

I am really just so lucky. Wisdom tells us that you will have fewer roles as you age, and less good parts, but that hasn’t been the case for me. I have just been so very fortunate.

“Marjorie Prime” opened theatrically in select cities in August and is currently available on most video-on-demand platforms.

 

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Dec 152017
 

We are at a crossroads. Should we give Mom anti-psychotic medication to combat her hostility and irrational behavior (i.e., hallucinations, delusions, aggression, agitation), thereby knowingly accepting possible side effects of these drugs? Or should we continue to shepherd Mom through her heartbreaking performances and embrace her anger?

Mom is regressing into a world of incoherence and fantasy. She experiences what my dad calls psychotic episodes between periods of greater clarity with lack of cognition and total memory loss.

The use of anti-psychotic drugs must be considered with extreme caution. No drugs are specifically approved by the U.S. Food and Drug Administration to treat behavioral and psychiatric dementia symptoms in people with Alzheimer’s, though “off-label” use, where a doctor prescribes a drug for a different purpose than the one for which it is approved, is an accepted practice. How much is too much agitation? What defines a hallucination? Are there other alternatives? What are the risks involved? Is Mom a danger to herself or us? Who are the drugs really for—her or us?

We know from past experience that even a very low dose of one of the recommended drugs slows Mom’s gait, makes her sleepy and her speech more incoherent. But she is also more compliant and generally happy.

My dad is the one who spends all day every day with Mom. He has little time for himself, and he is often in conflict with Mom over her behavior. I had a renewed sense of his experience when he was out of the house for the whole day, and I was the key caregiver.

Several times during the day, Mom told me she had to leave. She walked to the back of the house and went from one room to the other. In Daddy’s studio, she went into the corner and dramatically pressed along the wall as if looking for a secret passageway. Back in the hall, she fumbled with the sliding door, trying to figure out how to open it. Then she went into the study, stood by the desk examining what was on it, opened the file drawer, and rummaged through it. I walked with her on several of her circuits, surprised at one point to find a folded manila folder under her skirt.

The first time it happened, it was only 8 a.m., too early to head to the local mall. I took the advice of our Filipina caregiver Sahli and let Mom struggle on her own. If we didn’t talk to her, she seemed less angry. But I was heartbroken to watch her actions knowing I could not help her or calm her in any way. When it was late enough to walk out, Mom hesitated. She told me she needed to stay where she was to find the way home. When I showed her the door at the other end of the apartment, she reluctantly followed me out.

We had a great time walking and talking, drinking coffee, window shopping, visiting rabbits in the pet shop and commenting on the people around us. On our walk home, Mom continued to radiate happiness. We stopped at my house and ended up making doughnuts for Chanukah. We listened to Benny Goodman, sat in the sunshine, swung our legs on the bed and laughed about everything. Mom cooed over the cat. Then she lovingly pet my stuffed moose, asking me at one point if it had trouble breathing.

At about noon, we went back to Mom’s house.

“This isn’t my house,” she said when we went inside.

And so began Mom’s second round of “going home.” She refused to eat lunch. She refused to take her nap. We checked up on her occasionally, but our idea was that she’d eventually tire and want to sleep.

At 1:00, I asked if she’d like to come back to my house to bake the doughnuts (they had to rise for an hour). Nope. Mom expressed an urgency to stay where she was. I left her with Sahli and popped home.

I was back by 1:30. I took Mom into her bedroom thinking I could convince her to nap by lying down with her. Ha ha. Mom examined everything in the room. She sat at the edge of the bed and made her skirt into a kind of pocket so that she could put things she’d gathered in it. Of course, the minute she stood up they all fell out. So she took off her skirt. She found a sweater and put it on over her other two layers. She took it off, put her skirt back on, then put on one of Daddy’s sweaters. She placed things under her pillow, including her purse, some tissues, a file from the computer room and Daddy’s sweatpants. All the while she kept up a running commentary on everything that she was doing. Most of it involved saying goodbye to me and kissing the top of my head because she was apparently heading off into the wild unknown.

Two hours later, we left her room. Sahli finally got her to sit down, and then miraculously, her mood changed. She ate lunch, had a cup of tea, talked and giggled, and somehow seemed to gain a modicum of normality. By then, thankfully, it was time to pick Daddy up at the train station.

What a greeting Daddy received. Here was Mom’s sun returned to her.

“I bet you’re glad I’m home,” he quipped.

And I was.

As to the drugs, it is not my decision to make. But I guess you know how I feel. I don’t want to lose any part of Mom that can interact with us with joy and laughter. I realize that this opinion may come at a steep price.

Chanukah, oh Chanukah. Doughnuts are the least interesting part of Chanukah historically, but they are synonymous with the modern-day holiday. The trick is to eat doughnuts without gaining a million pounds. Here’s a sensible recipe that I made especially for my dad.

Saba No-Fry Doughnuts

I made these doughnuts specifically for my dad—no milk, no fried dough. He deserves a special treat. They came out reasonably well; they give the illusion of eating a doughnut. The less you knead the dough, the spongier the doughnuts turn out.

2 teaspoons yeast
½ cup sugar
¾ cup warm soy milk
4 eggs
½ cup oil
3¾ cups flour
1 teaspoon salt
1 teaspoon vanilla

Icing:

1½ cups powdered sugar
2-3 tablespoons soy milk
1½ teaspoons vanilla
For chocolate icing, add 2½ tablespoons baking cocoa

Directions:

Proof yeast in a small bowl by adding yeast, sugar and warm soy milk. Let react for 15 minutes. Add eggs and vanilla. Sift in flour and salt. Knead till dough forms. Let rise for two hours in a warm area. Refrigerate dough overnight, or up to two days.

Remove from fridge and shape as follows: Without kneading the dough, make fist-sized balls and place on a baking tray covered in baking paper. Use a small, round cookie cutter or other item to make the doughnut holes. When all the doughnuts are made, cover with a towel and let rise for up to an hour in a warm area. Brush tops with egg and bake at 375° for 15 minutes. Meanwhile, in a separate bowl, mix icing ingredients. Dip warm doughnuts in icing then let cool. Microwave for 15 seconds just before eating.

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. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica MagazineHer 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 CollegeMiriam is a 20+-year resident of Israel and a mother of three. Her parents recently moved down the street from her.

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Dec 152017
 

Every Christmas, it’s my family’s tradition to make homemade tamales! We make pork, chicken and raisin, usually 12 to 15 dozen. Christmas Eve dinner always includes these specialties, and then our extended family takes some home for Christmas morning. I love everything about this time of year, from our family get-togethers to knitting gifts and watching all of my favorite Christmas movies.

Although we plan to continue these traditions together, I will be resting more than usual. I will require my daughter’s assistance in preparation for the holiday season and help from my sisters in making our feast.

It’s not easy when you don’t feel like you. It’s even more difficult when you start to notice that you are forgetting things.

In 2016, I was finding everyday work difficult, having to use sticky notes at all times to remind myself of the littlest of tasks. “I am having memory problems and I don’t know why,” I told my doctor. “Nothing is making sense to me.” My physician performed some cognitive tests before referring me to a neurologist. Following a neuropsychological evaluation and PET scan, I was diagnosed with mild cognitive impairment (MCI). The aftermath was a blur. This past summer, my diagnosis was changed to Alzheimer’s disease.

Although I was shocked upon my initial diagnosis, I had a gut feeling that it wasn’t going to be good news. I agonized over the next few weeks, trying to decide how to break the news to my friends and family. Finally, I shared my diagnosis with my two adult daughters. They were devastated, as was I, knowing that they would have to be my caregivers someday. Although they have grown up, I still see them as my little girls.

I know exactly how my daughters feel because I experienced an Alzheimer’s diagnosis with my own parent. For five years, I worked full-time while taking care of my mom. Now I am experiencing caregiving from the other side.

I am one of the youngest in my family, the fifth child of six; when I shared my diagnosis with other members of my family, many of them reacted with denial. While my family tried to come to terms with this new situation, so did I. I had to start accepting the new me.

A New Day

Despite my family history, I didn’t see this coming; I always saw myself working until I was much older. Now my life is totally different, but I am dealing with the cards I’ve been dealt. After all, God only gives you what you can handle.

I still have so much to give and want to continue to use the skills I have, which is why I became involved in the Alzheimer’s Association National Early Stage Advisory Group (ESAG), which I applied for after finding information on the Alzheimer’s Association’s website.

I want to make sure the right resources are being provided in my community, because I know that anyone who is recently diagnosed – or who steps into the role of a caregiver – needs help. The most important thing to remember as a caregiver is not to neglect yourself; you are no good to anyone else if you do.

It is extremely overwhelming, providing support for someone you are so close to and love so much. You want that person to be with you forever, so to speak, but you know that you’re going to lose them. The sad part is you lose them twice: when they forget you, and when they pass away. I regret that my daughters will have to experience what I did.

A New Goal

In our Latino community, people are afraid of dementia; a lot of Hispanic people are not going to the doctor or talking openly about the disease. We deal with familial issues internally: if there is a problem within the family, we take care of it.

I can recall my brother’s reaction to my diagnosis. He said that I didn’t need to tell anyone, and that it was no one’s business but ours. I know he said this to protect me, but I have told people, despite it being extremely difficult. It’s hard for me to think about the Latina women who don’t have the support system and resources I do. Who is helping them?

It’s my goal to help get more information out to the Latino community that is tailored to their needs. People are more comfortable in their native tongue, and it’s important that we consider all of the communities who aren’t as inclined to ask for help.

A New Me

As for me, my days are different now. In the past, I would simply jump in the car and go wherever I please. Now everything has to be thoroughly planned out. My youngest daughter Jessica recently moved home to help me and goes with me everywhere. My oldest daughter Lizette handles my budget and the day-to-day things I used to do but can’t do now.

I used to read a lot, but now I have to read things over and over just to let them sink in. I don’t have as much energy, crowds make me antsy and I have trouble maintaining a conversation when my words don’t come out the way I want. My learning ability has certainly changed; it’s difficult being an educated woman who had so many plans that were cut short.

As a Latina woman, I am a natural nurturer. As a community, we believe that it takes a strong person to take care of a family, and that is something I have always done. When Jessica moved in, I was happy, but also sad. She is putting her own personal life on hold by coming home and helping me. That being said, our time together is special. We attend early-stage support group meetings through the Alzheimer’s Association, have long lunches together and even go to the movies during the day, which is something I never did before in my life! I’ve had to accept that life isn’t all work, work, work anymore; I’ve slowed down, and that’s okay. Shopping around the holidays is certainly easier with an extra set of hands!

A New Dawn

You have to be tough if you are living with dementia. You have to push yourself continuously and keep your brain active, and it’s my goal to be as mentally alert as possible for years to come. This new chapter in my life has allowed me to be positive because of all the support I have around me.

To others living with this disease, I can only say “embrace yourself”: love who you are, and accept who you are today. You will continue to make new discoveries about yourself, and you will make mistakes along the way. Don’t trouble yourself over those mistakes. Now is the time when you have to accept the new you. Your new personality and reality won’t be perfect, so don’t strive for that. After all, no one is perfect, whether they have dementia or not.

You may be shell-shocked when you first hear of your diagnosis, but educating yourself will make things easier for you and your family. Do only what you want to attempt to do, go only where you want to go and create whatever it is you want to do this holiday season. You will be with family, the ones you love, and they will understand that you can’t do everything you used to do. No one will care if the house or the tree isn’t perfectly decorated. Just live every moment together in caring for each other. This holiday season, I am so thankful for being able to pray. I am thankful for having another year of still remembering my family and those I love.

About the Author: LuPita Gutierrez-Parker served as a regional admissions advisor for Eastern Washington University for 10 years, following a 32-year career in social services. She has two adult daughters, two cats (Vader and Chewie) and enjoys knitting, swimming, movies and volunteering in her community in Yakima, WA.

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Nov 152017
 

It’s been nearly three years since my sister-in-law Angela called to inform me that my youngest brother Richard was heading to the Mayo Clinic to get a second opinion to confirm his Alzheimer’s disease diagnosis. I remember it vividly; the news stunned my family. We had no family history and no connection to Alzheimer’s. ‘How could this be?’ I thought. ‘He’s only 53!’ A few days later, the phone call came from Rich, confirming the diagnosis. He explained that he had cried it all out and was going to take a positive approach with his journey. He was optimistic and shared that he was overwhelmed by the outpouring of love and prayers from family and lifelong friends. It was official: Rich was going to take it one day at a time.

Janice with her brother Richard.

Alzheimer’s has surrounded me for nearly three decades. As a human resources director for Brookdale Senior Living, I am all too familiar with the disease from the training we’ve provided our associates over the years. I’ve seen many residents face the illness and have watched as the faces of their family members become unfamiliar. The idea that my own family is going to realize this is heartbreaking.

Ironically, during the timing of this news, I had been asked by my executive director to lead the charge in working closely with the local Alzheimer’s Association chapter to organize a team for the upcoming Walk to End Alzheimer’s. More passionate than ever, I jumped at the chance. My community involvement through the years had been extensive, and fundraising for various charities had always been something that came easy to me. Networking and raising awareness for a cause that I believed in was a no-brainer, especially when it involved a family member.

Our committee came together and we planned our first fundraiser: “Brews & BBQ.” The committee members were my Brookdale family. The event was held at a local beer pub where my daughter worked on weekends. We asked a friend who had a barbecue business to cater the food, and discovered he, too, had ties to the  disease.

When we asked for silent auction items, no one said “no” to our requests. We were stunned to find that so many of these small business owners had a connection to Alzheimer’s as well. The event had a great turnout and we raised nearly $4,000!

The Walk to End Alzheimer’s team.

We ended up having one of the largest teams at the Walk to End Alzheimer’s, raising nearly $5,000, and we were recognized as one of the top teams. The results fueled our committee to raise even more money this year. Our second annual Brews & BBQ moved to the barbecue owner’s venue, and live music was provided by friends who were musicians; we raised $7,000! Our Brookdale community associates held monthly fundraising luncheons, bringing our total to $10,000 – and halfway to my personal goal.

This past June, my brother, who lives in Colorado Springs, came to visit my family for three weeks. At first glance, you wouldn’t really notice any changes. He was in good spirits, conversational and enjoyed one of our luncheons where we had raised over $400. He was proud to see my involvement with our local Alzheimer’s chapter, just as I was proud to help lead the charge in his honor.

But the signs are there. Rich is learning to navigate the daily tasks we all take for granted. He asks for help when he needs it, like making change at a convenience store or packing his suitcase. Rich is enjoying a visit from his daughter who recently moved to Germany, and her son (his first grandchild) who was born last December. This past year he’s traveled to Mexico, Washington, D.C. and to visit his oldest son who’s in the Navy and stationed in Japan. Our dad, who talks to my brother daily, notices the slight changes with every phone call. But, again, Richie is determined to live his life and take it one day at a time.

In August, Corpus Christi was in the path of Hurricane Harvey. The Coastal Bend area was greatly affected by the storm, as was most of Southeast Texas. This caused the Walk to End Alzheimer’s to be rescheduled for December 3. The impact of the storm has affected our fundraising efforts as well. We had planned our first annual “A Shoot to Remember” – a sporting clay event in November when we were hoping to raise another $10,000. The committee decided to postpone, so we are looking forward to making this event a reality in 2018.

Like my brother, I don’t quit. I’m determined and will continue to raise awareness and funds for the Alzheimer’s Association so others can live their lives to the fullest, too. I quickly learned that once you’ve been personally impacted by this disease, a team effort best enables us to pursue the fight against Alzheimer’s. We are taking it one day at a time…and we are all in it to end it.

About the Author: For the past 30 years, Janice Cagle has had a front-row seat when it comes to seeing the impact of Alzheimer’s. As a human resources director at Brookdale Trinity Towers in Corpus Christi, Texas, she knows how the disease can affect both those living with it, along with their loved ones. Now, she’s seeing it even closer as her brother has been diagnosed with the disease. Now, Janice is even more determined to make a difference through the Walk to End Alzheimer’s.

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Nov 142017
 

We spoke with Mal Young, Executive Producer and Head Writer of The Young and the Restless, about the upcoming Alzheimer’s storyline centering on Dina Mergeron and the Abbott family, which begins Friday, November 17 when Dina’s family learns of her diagnosis. The daytime drama is in its 45th season on CBS. Many of the cast and crew have been impacted by Alzheimer’s, including Mal, who lost his mother to the disease, and participated in this year’s Walk to End Alzheimer’s to show their support for the millions of people facing the disease.

Firstly, Mal, we are sorry to hear about the loss of your mother. Surely she would be so proud that you are addressing the Alzheimer’s crisis publicly and head-on. What was life like with her, growing up, and then after her diagnosis of Alzheimer’s? 

The Abbott Family of Y&R.

I had very humble beginnings in Liverpool, England growing up with my older sister. My mom worked in a cake shop and my dad was a milkman. Although we lived modestly, we were exceptionally happy.

My parents gave me my love of television, being huge television watchers in 1960s and 1970s. In 1960, the British soap opera Coronation Street (which is still running today) began. My mom watched every single episode every day of the week until the day she died. I was bound to – and born to – work in soap operas, as I grew up in a home and society where these shows were such a huge part of life. I am a lifelong storyteller because of my upbringing.

When my dad died, my mom truly fell apart. She was depressed and clung to her job, which seemed to be the only thing keeping her afloat. But then my sister and I received calls that she wasn’t showing up to work, or that she was making mistakes like giving people the wrong change back for their purchases. When she had to give up her job, it was a massive hit. I think she was terrified of coming home. It was empty inside that house, and she must have felt very alone.

So many people I’ve talked to can relate to this loneliness and the heartbreak that emerges when one grapples with Alzheimer’s disease. My mom was married to my dad for 53 years, and after he passed, Alzheimer’s seemed to seep in and take over. It weakened her. Although I phoned her every day after dad died, I would just listen to her say the same thing over and over. Alzheimer’s had changed her before we even knew it had made its appearance.

One day when I was back in Liverpool visiting mom at her house, we were watching television, as we so often did. She had always been very “house proud”; she was always constantly tidying up. I noticed that something was off about her television set. I got on my knees and put my finger on the screen and discovered it was thick with dust. The chill I got was all consuming. That is when we went to the doctors and had tests done, and soon after, I watched the light go out in her eyes. That was truly the beginning of the end, and my sister and I sought out a proper dementia care facility to help care for our mom.

Mal Young

Although I could now afford the biggest and the best place for mom to live (and sort of wanted to show off that I could), my sister made me see that mom would want to be somewhere comfortable, and nowhere grand or opulent, as she had always lived modestly in a small house. We found a nursing home in Liverpool where mom could see the rooftops of the buildings where she grew up from her new bedroom. She regressed from that point on, often asking where my dad lived, or fell into moments where she thought she was 16 years old and asked when her mom was coming to see her. It broke my heart, but I never corrected her.

What can you share about the Alzheimer’s story arc launching on November 17? How does this topic fit into the Y&R universe, and did you pull from your own life and experiences to tell this story?

Soap operas, particularly in the United Kingdom, have always had a great tradition of taking real life issues and touching audiences with them. In America, Y&R was historically the first soap to feature this type of material.

In my career, I have learned that I don’t want to preach to people. I’ve tackled the difficult topics through my television work: domestic violence, breast cancer, children with disabilities. But I am simply a storyteller providing a mirror to society, saying: “This is you.” Featuring these topics opens our audience up for discussion and it helps people grappling with these issues realize that they aren’t alone. We want them to see themselves in the characters, and they want to be heard.

It’s my belief that drama should reflect the bad and the good of life, and I’ve always approached it in an optimistic way.

As human beings, we take our knocks and build ourselves back up. We keep calm and we carry on. Soap operas can be very therapeutic for the audience, and I know from experience that if I’m in a room with 10 people, nine of them can relate to the topic of Alzheimer’s because they’ve experienced it in one way or another. As much as it’s important to include crime and love and comedy in the stories we tell as entertainers, it’s also greatly valuable to highlight an important health crisis and situation in life that millions of people can connect with.

Rather than go the route of making a dull documentary, I choose to entertain and inform. We can depict Alzheimer’s in almost real time, unfolding the storyline week after week. Viewers that come along on this journey may feel pain, but they will also feel like part of the Abbott family, or see their own experience with the disease be reflected through the medium of television. It makes for amazing, important drama.

You have a great history in television, and on your Twitter account you say your life is a soap opera. What opportunities did you see in taking this role on at Y&R? Was it always your goal to change the conversation, addressing a topic such as Alzheimer’s?

As much as people focus on the drama of soap operas, I can’t resist doing comedy. It’s said that everyone who comes from Liverpool is a comedian! I always find the bright side of life, even in the tragic.

After mom moved to the nursing home, she staged a genuine breakout. She got a group of women together, like in the film The Great Escape. She worked out how to get to a fire door on another floor and my sister and I were both brought in, like parents being called to their child’s school after he or she is sent to the principal’s office. It was very serious, and yet I found this tragic black humor in it. While people were up in arms about it, I was so proud of her. It took the air out of the situation a bit, and I thought to myself: “Yes…good on her.”

Actress Marla Adams portrays Dina on Y&R.

I put a lot of my mom into the Y&R character of Dina. She will sometimes say outrageous things, with no filter. It’s fun, funny and heartbreaking all at once. As entertainers, we are here to implore, to excite, to surprise and to of course entertain. Y&R may not be a public information source, but it can balance entertainment with knowledge that isn’t patronizing to our audience.

Can you tell us a bit more about how Dina Mergeron’s Alzheimer’s disease will play out? What decision-making went into choosing this particular character and family for this story arc?

The effects of Dina’s disease are far reaching and multi-faceted – not only does her illness take her from the position of powerful businesswoman to a much more vulnerable place, but it also erodes the relationship with her children that she’s worked so hard to rebuild.  We want to show the light and the shade: the difficult, emotionally-charged moments for all affected, along with the lighter, even sometimes humorous side to the subject.

We chose the Abbott family because Dina has a complicated relationship with her children, and the Abbotts place a large emphasis on their family legacy and name, and to watch those ties be affected and challenged in an emotional way will help us to portray many sides to such a complicated and relevant issue.

How should we expect Dina’s diagnosis to impact her family and her relationship with children – and her children’s relationships with each other?  What will it be like for the Abbott family to learn about Dina’s diagnosis after her being absent from their life for so many years?

We see the Abbott siblings divided over their personal responsibilities to their mother, particularly Ashley and Jack. Dina came back to Genoa City to mend the rift between her and her children, and though it was not an easy journey, Dina became a readily accepted member of the Abbott family. However, when her disease begins to take hold, it becomes obvious that Ashley wants to avoid talking about the situation, while Jack wants to do everything in his power to stop it. This creates a divide between the two siblings, both in a professional and personal sense.

Why was it so important to use your platform to address this topic? What would you say to people who don’t know much about Alzheimer’s, or who may think someone in their family is affected?

The value of this storyline playing out week after week is that we can focus on those smaller, everyday details. We can show the whole journey, and viewers can engage whether they have been affected by the disease or not. I hope that viewers with experience with Alzheimer’s can relate to the material so that they feel less alone.

People who don’t know about it need to know about it. I can pick up any newspaper and find a story about it. Unfortunately, it seems like it is much more prevalent than in the past. Organizations like the Alzheimer’s Association have brought this to the front, and the lines of conversation are open, not tucked away. No one has to be ashamed.

There are lots of ways to engage with a soap opera. If we can help enlighten people – not educate, but touch and inform – we can be a bigger part of the conversation. We approach this story about Alzheimer’s with respect and plan to interpret it responsibility to our audience and all people affected by the disease.

With drama, we go deeper. When it is time to be lighter, we want people to laugh with our characters. We want our viewers to dream and hope with them, because that’s what life is all about – emotions, connections. The human spirit is a powerful thing, and we plan to do it justice.

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Oct 272017
 

I met my husband Steven in an organic chemistry class in college. There were handouts coming down the aisle, and Steven, who was sitting to my left, received the last one for our row of seats. Before I could do anything, he quickly jumped over the rows to the front of classroom to grab a handout for me, a knight in shining armor! We have been together for 41 years.

Today, Steven is my care partner. Marriage isn’t an easy business – there are lots of ups and downs and the need to adjust to the many changes that come over so many years. My being diagnosed with Alzheimer’s in 2016 at the age of 65 was one of those changes. Although I am sure I ask Steven the same question over and over again, he never shows any frustration. I am so thankful to have him next to me. In fact, sometimes I feel like one of the luckiest people alive.

I understand the denial many people go through when receiving a diagnosis of Alzheimer’s or dementia, especially if they are still part of the workforce. Not only was I diagnosed after retirement – a slight silver lining – but my mom had an Alzheimer’s diagnosis as well, at the exact same age as I did. Knowing my family history with the disease, my formal diagnosis brought both sadness and relief.  I knew what was ahead and yet that also meant I could take steps to prepare myself for a different life, and I am grateful for that insight.

Unlike my mother, I never had the desire to hide my disease from anyone. Yes, people react differently to the news. Some can’t handle it, and treat you differently, while others – as I’d like and want it to be – treat me the same. You can’t ignore the disease and you can’t predict how someone is going to react to the news. You can only tell them and move on and live the best life you can.

When it comes to Alzheimer’s, it often takes a village.

I personally went through fear, depression, acceptance…all the standard emotions that come with this kind of diagnosis. I saw several social workers, which was enlightening because the people I spoke with knew exactly how to help me through my experience. I would encourage anyone with dementia of Alzheimer’s to seek out this kind of support. It can be as valuable as the support one can receive from a caregiver or care partner.

I also have found support throughout my community. From my experience participating in the Walk to End Alzheimer’s to the fantastic people from the Indianapolis chapter of Alzheimer’s Association, I am so thankful. I am in a walking club where I make positive one-on-one connections and I’m an active churchgoer, surrounded by people who care for me and who care about me. I come away from my encounters with this variety of dedicated people so uplifted – and more extroverted!

There is another caregiver in my life…

He is a “teenage” Labrador-Australian Shepherd mix and such a joy! To call my new pup, Jackson, energetic would be an understatement. Two times a day, I take him for a walk that releases his boundless energy and helps calm me down.  He doesn’t know that I have Alzheimer’s, and he doesn’t care that I do. He doesn’t change his demeanor around me and he doesn’t judge. He just loves me for who I am.

Care and love can come from so many places: my husband, my son, my friends, my extended family and my rescue dog, who in many ways rescues me. To be supported on this journey is so important, and I honor each and every person who has been a part of my journey. It’s not over yet.

About the Author: Mary received her Master of Science from the University of Illinois in reproductive physiology, and spent her career as a biologist, most notably working at the Indianapolis Zoo, studying the artificial insemination of African elephants. In addition to her work in the science field, Mary volunteered as a docent at the Indianapolis Museum of Art and was the editor of the Expatriate Magazine for American women’s Club in Belgium, where she lived for two years with her husband, Steven, and her son, who lives in New York City with his wife.

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Oct 272017
 

This is great what you’re doing.

My dad had Alzheimer’s. He passed just over a year ago, finally free. I miss him, but all the good memories mean he lives on.

Thank you so much for raising awareness.

***

That’s just a tiny snapshot of the tremendous reaction Teryn Schaefer received – and continues to – for wearing a simple, purple wristband.

“They all knew somebody, either directly or indirectly, who had been affected by Alzheimer’s or dementia,” Teryn says. “I don’t know how to explain the feeling of having so many people respond so genuinely. I personally don’t know many other people who’ve been affected the way I’ve been, so it was almost alarming to see how big the community of those touched by Alzheimer’s and dementia really is.”

As an on-camera host for the PGA TOUR, along with her regular presence on the grounds of TOUR events, Teryn is using her platform to create awareness and do her part to assist in the pursuit to end Alzheimer’s. On her Twitter and Instagram channels – with more than 10,000 followers – Teryn on September 18 posted:

Today I’m wearing the @alzassociation purple band in honor of my grandfather on my show #TrendingOnTOURPlease join us in helping us bring awareness and defeat this disease, together we can find a cure.

She’s kept that purple band on ever since, including during the week-long, season-ending TOUR Championship in Atlanta this September.

“People are cured of cancer every day because of the awareness that’s been in place for quite some time, and it’s awesome,” Teryn says. “I’ll do anything I can to help bring Alzheimer’s into that light. A diagnosis of any disease is devastating, but I don’t think people ultimately realize how difficult it is to deal with Alzheimer’s and how hard it is on the families.”

Teryn lost her beloved maternal grandfather – Frank Miller – to Alzheimer’s in 2016 at the age of 81, some 10 years after his diagnosis. She cherishes special memories sprinkled throughout her childhood, so much of it spent with her grandpa. A retired special education and elementary school teacher, Frank and his granddaughter were nearly inseparable during Teryn’s youth.

“He was a huge part of my life,” Teryn says. “We would go to the zoo and the art museum, and he always had projects to do with me around the house – any number of outdoor activities from gardening to helping him mow the grass. He thought it was good for us kids to get in some hard work. We were very close.”

In the early 2000s, Teryn’s grandmother began to notice symptoms of forgetfulness in her husband Frank. An avid reader and learner, Frank found himself having to re-read paragraphs from the page of a book he’d just read, and the word and number puzzles he’d once been a whiz at became more and more challenging to conquer.

Frank’s mother died from complications of Alzheimer’s, “so he knew all too well the symptoms of dementia,” Teryn says. “He knew before his diagnosis, he understood.”

Teryn – who grew up in the small town of Waterloo – says her hometown’s proximity to St. Louis was fortuitous, for shortly after her grandfather’s diagnosis, doctors at St. Louis University conducted a research study with people living with dementia – and Frank was a willing participant.

“He said from the start,” Teryn recalls, “’Whatever we can do to help with the research and in some way make a difference with this disease, we’ll do.’”

When Teryn graduated from the University of Missouri – one of the country’s most prestigious journalism and broadcast media schools – Frank was able to attend and see Teryn receive her diploma, though he’d long since been able to recognize her by name.

“My grandfather was basically not himself for the last 10 years of his life, and that’s a really long time for someone to not even know who they are,” Teryn says.

Unable to “process my grandfather’s death and figure out a way I can honor him,” Terynand the Alzheimer’s Association recently connected. Suddenly, the blurry picture of how she planned to support the fight to end Alzheimer’s came into greater focus.

“It was something I needed,” she says. “I needed someone to help me get a jumpstart into figuring out how I can make a difference.”

Teryn plans to participate in Walk to End Alzheimer’s in November in her adopted hometown of Jacksonville, Florida – and, of course, continue to showcase the purple band on her left wrist.

“For all those who fight Alzheimer’s and dementia – and for those who have been affected by it – I raise awareness. I want all of us to remember our loved ones as the people they were for the majority of their lives, and to preserve those memories as best we can.”

About Teryn: A rising star on the sports-media scene, Teryn Schaefer hosts several shows for the PGA TOUR, including The Takeaway and Trending on TOUR, and is a contributor and host on PGA TOUR LIVE.

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