Sep 272017
 

There is no escaping the similarities between us. Mom and I look alike. We dress alike. (We both wore blue dresses on Rosh Hashanah, and on Sunday, we were wearing black skirts and white t-shirts, definitely unintentional on my part.) We walk alike. And our voices are somewhat similar, too, despite my American versus her British accent.

I am reminded of these facts every time we are together. It is not something I can avoid: it is genetically determined. I keep wondering how it reflects on me. To what extent do people separate us as two distinct individuals and to what extent do they mentally connect us as being almost identical?

I see myself in her. I, too, am aging. Will I become like Mom? There are age spots on her hands and arms, her toes are curling in, her eyes are sometimes watery. I can accept the physical resemblances. It’s the worry that there are also cognitive parallels that are harder to swallow.

For me, I’m more used to thinking about myself relative to my children. As parents, we strive to make our children like us. As children, we’ve probably spent the better part of our lives individuating from our parents, finding our own path, rejecting so much of what they taught us and held dear. In both parent-child and child-parent relationships, the tangible and the intangible—common facial features and also tastes and desires—meld and war within us; we forget how alike we really are, so caught up are we in our struggle (and they in theirs) for independence.

I haven’t lived in the same city as my parents since I was 18. That’s a long time to have sustained my separate life. And my children are not really at home now, either, having grown and chosen their own paths. Yet we are all genetically tied together. It is important to acknowledge our similarities—perhaps even embrace them. It is equally important to allow for each of us to maintain our uniqueness in our own generation.

As with all children, I am a product of two parents. I definitely have my dad’s genetic material in me, too. In my immediate family, my brother Simon inherited our mom’s outgoing personality. I am more pensive, like my dad. And, yet, being with Mom, I must assume a more outward disposition. I run interference for her when we’re out walking. But I’m struggling with the notion that I cannot be responsible for Mom’s interactions with people. Not everyone we meet and talk to is aware of her Alzheimer’s, and I can’t quite tell them when she’s in the middle of explaining some nonsensical thing or angrily voicing her negativity that there is a reason for her odd behavior. It reminds me of when I was a little girl and wanted to disappear when my parents did something that embarrassed me (like speak English with a British accent). Except I’m an adult now, and I can’t run away.

Once during a troubling experience with a friend, I was yelled at for being just like my mom. I took instant offense to that, being of an age where any reference to our similarities was an insult. Today, I understand that I am who I am because of the intellectual and emotional atmosphere in which I was raised. I thank God for making me similar to such a wonderful, loving, vivacious woman, one whom I dedicate myself to protecting as much as I can.

And so I find myself eating honey cake, this being the season, its sweetness seeping into me and making my life a little more joyful. This is a light cake buoyed by the love I sifted in—and the egg whites.

Honey Cake

I ate my piece slathered in butter. It was really good.

3 eggs, separated (or 2 large eggs)
4 tablespoons oil
¾ cup honey
1 cup flour
1 teaspoon baking soda
1 teaspoon cinnamon
1 teaspoon vanilla

Directions:

In a large mixing bowl, combine the egg yolks and oil and then add the honey and dry ingredients. In another bowl, beat the egg whites until stiff. Fold into batter. Pour into a loaf pan and bake at 350° for 30 minutes.

About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. 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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Apr 042017
 

“Mom has been very belligerent this morning,” Daddy told me on the phone. I was on the last leg of my journey to their apartment, having boarded the shared taxi from Tel Aviv to Netanya. “She’s been shouting and yelling. She pushed me out of the bathroom and swore at me and called me a ‘dirty old man.’ Then she refused my help getting dressed. I wanted you to know.”

I was still about forty-five minutes away, so there was not much I could do, but I did say hi to Mom on the phone. I was hoping I could help change the situation if Mom was still in a bad mood when I arrived.

Forty minutes later, Daddy called me again. By this time I was in Netanya, walking the few blocks from the central bus station to their apartment.

“Mom was insisting she needed to go out,” he said. “We had a hard time convincing her to stay inside.”

“Oh.” I was puzzled. “Why didn’t you take her out if she was insistent?”

“I wasn’t dressed yet,” Daddy replied. “And you were on your way.”

It wasn’t worth being frustrated from afar, but I could hear the annoyed tone in my voice as I responded.

“If she wants to go walking, let her go walking,” I said. “And if you don’t want to go, you can send Sahlee (the caregiver.) Don’t use me as an excuse.”

“It’s too late now,” he said. “She’s watching her favorite Danny Kaye video, and you’ll take her out when you get here.”

Five minutes later, as I greeted her at their door, Mom was searching for her coat and bag and hat so that she could go out. She said goodbye to us as if she was heading out by herself. She was very surprised when I told her I’d go out with her.

Mom was in a good mood when we left the house, and in fact we had an agenda. I’d made a salon appointment for Mom to get her hair cut. We walked through town, stopped for a quick cup of coffee, then headed to the salon. Mom was effervescent, singing and smiling, and when she saw the beautician, she praised her many times for her excellent work. At no time was she angry or bombastic or moody. Even when we were back at her apartment and I cut her nails—which Mom begrudgingly let me do—she was happy and relatively calm.

She did say some strange, disjointed things. As we were walking home, Mom tried to tell me that people she didn’t know often recognized her in the streets. “Sometimes they see my funny face and they say hello,” she said.

“Why is your face funny?” I asked.

“It is. There’s nothing I can do about it,” she said. “But I don’t know them.”

This was wonderfully ironic as Mom constantly greets strangers with warmth and unfounded familiarity whereas the people she doesn’t recognize who say hello to her are undoubtedly friends or acquaintances. And let’s not forget that the people who care about her the most and the ones with whom she is most familiar are often addressed with anger and curses.

Later on, I called to say I’d returned home safely only to hear Daddy’s frustrated voice on the phone again. “I can’t get her to sit still and watch anything,” he said. Mom’s caregiver Sahlee was on her break, so it was up to Daddy to help her.

“Why don’t you read a book together?” I asked. “Or sing some songs. Or look at photos.”

I realized that was the difference between living with someone with Alzheimer’s 24/7 and visiting once a week. The time I spend in Netanya is fully dedicated to Mom and all her needs. There is no need to focus on other tasks and chores as I do in my own home. I don’t have to worry about anything other than entertaining Mom and giving her my undivided attention. And I can also give advice freely. I have to accept, though, that it isn’t always welcome or wanted.

With no alternatives and pangs of sympathy for my dad’s frustration, I hung up the phone and started preparing dinner.

This isn’t exactly what I made for dinner, but in honor of my mother-in-law’s visit, I indulged and made her lemon meringue pie. What do we have a lemon tree for if not for this? With Passover just a week away, and the stores already carrying Kosher for Passover products, I decided to make this pie kosher for Passover, too. There’s not much difference in the Passover recipe and the year-round recipe. I’ve listed the ingredients for the regular crust and for the Passover crust. Enjoy!

Lemon Meringue Pie
Love is a great catalyst for trying new things. As a young bride, I wanted to please my mother-in-law by making one of her favorite desserts. I hope I succeeded.

Regular Crust:
2 cups ground petite beurre cookies
½ cup brown sugar
1/3 cup oil

(These can be ground in a mixer or in a closed plastic bag with a rolling pin.)

Pesach Crust:
1 cup ground almonds
1 cup fine matza meal
½ cup brown sugar
1/3 cup oil

Filling:
1 cup sugar
4 teaspoons potato starch
1 cup fresh lemon juice
4 egg yolks
2 whole eggs
Zest of 1 lemon

Meringue:
4 egg whites
½ cup sugar
½ teaspoon vanilla
½ teaspoon lemon juice

Directions:

  1. In a small bowl, combine ground almonds, matza meal and sugar for crust. Add oil and mix until the “dough” can be pat into pie pan. Cover sides of pan to edges. Bake at 350° for 15 minutes. Let cool.

  2. Separate eggs. Place yolks in a small bowl temporarily. Let whites sit in a glass bowl.

  3. Mix sugar and potato starch for filling in a saucepan. Add lemon juice, yolks, eggs and zest. Stir until sugar and potato starch are dissolved. Turn on medium flame and continue stirring until mixture begins to thicken (may take several minutes). Bring to boil then remove from heat. Pour over cooled pie crust. Place in refrigerator until meringue is ready.

  4. Beat whites until foamy. Slowly add sugar, vanilla and lemon juice. Continue beating on high for 2 or 3 minutes until stiff peaks form.

  5. Pour meringue over pie, making sure to spread to edges of crust. Form peaks for decoration with your spatula (or spoon).

  6. Set oven to broil. Move oven rack to highest slot. Place pie on oven rack and watch carefully as top of meringue browns. Remove immediately from oven when desired effect achieved.

  7. Keep pie in refrigerator until ready to serve.

    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 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.

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Jan 132017
 

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

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

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

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

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

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

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

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

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

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

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

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

Banana Muffins

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

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

Directions:

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

 

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

Apr 272016
 

Being a mom is no easy task. It involves headaches, backaches, heartaches and plenty of exhaustion. It can also be one of life’s greatest joys.

Being a caregiver is a difficult role. Approximately two-thirds of caregivers are women, and over one-third of dementia caregivers are daughters.

We know that mothers and daughters share a unique bond, and this Mother’s Day, we are celebrating mother-daughter relationships that are truly as unique as they come. Watch these videos to hear women with Alzheimer’s in conversation with their daughters about motherhood, their most important life lessons and living with and supporting each other through the journey that is Alzheimer’s.

Carol and Lydia:

Pat, Lita and Laura:

Barb, Caroline and Kimberly:

 

View the full playlist and watch all the videos at this link.

Feb 112016
 

In honor of Valentine’s Day, we are featuring video blog stories of couples who are dealing with Alzheimer’s. Setting any commercial hype around the Valentine’s Day holiday aside, love is all that really matters. Love is what brings couples together and helps them build lives together. Love is what keeps a care partner going on the difficult days. Enjoy the videos below to learn what Valentine’s Day means to those living with Alzheimer’s, from wedding days and lifelong commitment to the simple and sweet ways they show each other love on a daily basis.

Angie and John discuss John’s special way of showing Angie his love on the Valentine’s Day holiday before and after his Alzheimer’s diagnosis.

 

 

Nancy and Rod reflect on the best parts of each other and what they love most.

 

Tracy and Jennifer talk about getting married and the importance of being there for one another for the rest of their lives.

These videos originally appeared on www.alzheimersblog.org.
Jan 122016
 

Let me start by simply saying thank you! Thank you for your tireless work in the medical field. You may be prescribing or handing her medication, and checking for side effects. Maybe you are the nurse’s aide who helps her get dressed in the morning and reminds her where the dining room is. Are you the social worker who takes my concerned calls? Or the lab technician who draws her routine blood work? Maybe you are the one who did her chest X-ray when she had that horrible cough.dil

Whatever role you play in the care of patients with Alzheimer’s disease, please know that I see you. I see how you care about and even love her. I hear you lovingly call her “honey” and “sweetie” and laugh with her when she is confusingly silly. You are so important in the life of a patient with Alzheimer’s disease.

I am a healthcare professional myself, a nurse, but first I am human.  I am the daughter of an amazing woman who has been stricken with a horrible disease. I would like you to see the person my mom was, not the person she is now. Everyone with Alzheimer’s disease has a life story behind them. I would like you to hear Mom’s. She had a life before this disease took her away from us and into your care.

My mother is one of 15 children, and was raised on a farm in upstate New York. Of those 15 children, seven of them have died from, or currently have, Alzheimer’s disease. Our family suffers continually as we watch our dear mother fade farther and farther away from us. I hope you realize, that sometimes, you are not only taking care of my mom, you are taking care of her family. That sometimes your words comfort us and sometimes they anger us. We are really doing the best we can with this very important loss in our life.

So thank you for taking a step back — to see who my mom was before Alzheimer’s — as you care for her every day. And thank you for taking the time to get to know the stories of all the patients in your care with this disease. I bet you will find they led interesting lives. Please find the joy in them.

They need you so much. They need you to see them, to see they are just as human as you are. They need kindness and respect. They need you to help maneuver their very confusing days. They need dignity. They need silliness and smiles, compassion and love, patience and hugs. They need you, and their families need you.

About the Author:

Christine Dileone MSN, RN, is an Assistant Clinical Professor at the University of Connecticut School of Nursing.  She uses the resources of the Alzheimer’s Association in her teaching, specifically on communication techniques with dementia patients to maintain dignity.  She is a Ph.D. nursing student at the University of Connecticut, and plans to continue research with individuals with Alzheimer’s.  She coordinates a monthly Alzheimer’s support group and is actively involved in the annual Walk to End Alzheimer’s® as well as The Champions in the Fight Against Alzheimer’s Women’s Campaign.

 

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Dec 092015
 

“I don’t know if I’m lost or not,” Mom said as walked in the city. We were holding hands, the sun gracing us with warmth, the sheltering sky bright and blue.

I keep wondering what it’s like to feel that everything around you lacks substance, that what you knew a minute ago is now no longer familiar. What happens when your depth perception goes, and the general hubbub of the city becomes not just loud, but physically overwhelming? Or when you’re constantly feeling like something is missing—your bag, a shoe, your young child—but you don’t remember what it was or how to explain it.miriamblog

The other day as I was driving aound town, I suddenly realized I didn’t know where I was going. I could not remember how to navigate from point A to point B. The information I relied on was missing; it felt utterly blank inside my head.

Compared to some, Mom is doing great. She can still function in the world, to a lesser extent. We had a strange conversation at lunch where she asked me if my mother sang to me as a child. Who was I in her eyes, I wondered? Not her daughter. Not her sister. Who could I have been?

Sometimes it is enough to know that she enjoys my company. As I enjoy hers. As I leave my house each Tuesday and set out on my journey, I start narrowing my day’s focus. I put aside other thoughts, other chores, other aspects of me. I pack away my ego. I steel myself to the mystery, delight, and heartache of being with my child mother.

As we light the fourth candle of Chanukah tonight, let the light that shines so brightly from our individual flames light the darkness that is Alzheimer’s. Let us bring our precious loved ones into the light with us and treat them as kindly as we can.

I couldn’t let Chanukah pass by without making doughnuts. I love those ubiquitous fried dough balls. But who needs 600 calories every time you eat one! It’s not really about need, I know, but there are alternatives if you want to indulge without the shemen, oil, making you shamen, fat.

No-fry Doughnuts

These doughnuts are nearly as good as the real thing—sweet and light, and a whole lot fewer calories. Makes 12-16 bite-size doughnuts.

1 cup soy milk
¼ cup oil
¼ cup date honey
½ Tbsp yeast
1 tsp salt
2-3 cups flour

Coffee Glaze:

1 cup powdered sugar
2 Tbsp prepared coffee

Chocolate Glaze:

½ cup chocolate chips
½ tsp vanilla
½ tsp water

Directions:

Heat soy milk, oil and honey in a small saucepan. Bring to a boil then let cool. In a large bowl, mix flour, yeast and salt, and form a small hollow in the flour. Pour warm milk mixture into bowl with flour and mix. Kneed, adding flour if needed, until dough is springy to the touch but not sticky. Form dough into small round balls and place on baking sheet, making sure to leave room for them to rise. Let rise in warm room for up to 1 hour. Bake at 350° for 10 minutes. For toppings: Coffee—Mix 2 Tbsp prepared coffee with 1 cup powdered sugar. Stir to remove lumps. Chocolate—Combine ingredients in a microwave-safe bowl and cook on high for 40 seconds. Stir to melt all the chips. Dip rounded top of doughnuts into one or both mixtures, then let sit so glaze will harden.

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

Nov 182015
 

Laura HanniganIt’s a lot easier to say change isn’t easy than it is to experience change yourself.  I recently found this out firsthand when I said goodbye to friends, residents and coworkers at Brookdale Hillsborough, where I served as the Clare Bridge program manager for two years. In becoming the new executive director at Brookdale Hamilton, I wouldn’t be far away geographically, but away from the “family” I had grown to love.

Clare Bridge is Brookdale’s individualized and person-centered program designed to meet the specific needs of those living with Alzheimer’s and dementia. We celebrated many daily moments of success at Hillsborough, including the success of our Hillsborough Walk Team’s efforts and fundraisers.

Brookdale Hillsborough WalkOver the past three years, the Hillsborough Walk Team picked up momentum and grew from raising $600 the first year, $1,800 the next year, to $6,000 with matching gifts in 2014.

Brookdale working TogetherWalk to End Alzheimer’s is an energizing event that we all look forward to all year long. It was a chilly day this year, but our hearts were warmed by the incredible crowds and inspirational speeches, as people proudly carried team banners. We were all so honored to be part of this impressive turnout supporting the Alzheimer’s Association. Words cannot express the warm feeling we all shared and carried home in our hearts from hearing the speeches, receiving the flowers, and for sharing such a special day with so many people.

After this year’s Walk, we asked residents, their families and each other for additional fundraising ideas. Boy, did we get some good ones! Our tireless team entertained guests, prepared and served great food, decorated the building and made these events a wonderful time for all. A silent auction was our biggest hit.

Brookdale Taking in the Autction Bids

The silent auction really was a family affair.  Residents, their families and Brookdale associates donated all types of items to be auctioned off.  From hand knitted afghans to new appliances and Waterford crystal, the spirit of giving filled the community.  It was lots of fun and, at times, seriously competitive.  Our assisted living resident Roz and a Clare Bridge resident’s family helped man the silent auction, challenging others to outbid each other, and thus encouraging families to donate more to this great cause.

Brookdale Families Enjoying Silent Auction

Between our Walk and our other fundraising events, I couldn’t help but feel an overwhelming sense of pride in the Brookdale Hillsborough family. I, like so many others, have had family members who have had Alzheimer’s. I was touched by my grandmother’s experience and by the rough time my fun-loving uncle had with the disease.  When I play a tiny part in helping someone live at the highest level they can, I am so touched by the moment, and know I’m getting far more than I give.

Laura Hannigan and her Brookdale team of community associates, residents and resident families exceeded their wildest fundraising dreams for the 2015 Walk to End Alzheimer’s.

Oct 272015
 

I first met my now-wife Shannon at work. I was her supervisor, and since she knew the responsibilities of the department inside and out, I leaned on her for assistance.

We started to get to know each other on a more personal level and then we started dating. She asked me out – I had no idea she liked me in that way! After dating for some time, she took me to Disney World and “proposed”; we had a beautiful wedding on the sands of Pensacola Beach by the Gulf of Mexico and rest is beautiful history.

Learning of my diagnosis sticks in my mind, but not due to feelings of sadness. I was focused on the beauty of my wife. After I asked my neurologist if I had Alzheimer’s and he said “yes,” I remember crying uncontrollably. All I could think of at that moment was what my mother was going through at the time. (Brian’s mother died of Alzheimer’s.) Shannon sensed that. She took my hand and said, “I love you and you will NOT go through this alone. I will always be right here.”


Since then, she has beautifully kept her word.brisha

Before my diagnosis, we travelled a lot; short trips, cruises, trips to New Orleans (my hometown) or Fayetteville, NC (hers) and our favorite destination, Disney World. I used to tell her: “I’m your driver, you’re my navigator and we will go wherever you want to go.” We laughed a lot.

Sadly, the travelling had to stop due to finances. When both of us were working, we could basically do whatever we wanted. That changed when I was no longer able to work. Shannon became the sole financial support. We had to downsize in order to maintain a healthy lifestyle for our college-aged daughter and our son in high school. Shannon has had to adjust to my mood swings, my confusion, my argumentative moments (wanting to do the things I used to but can no longer do, like driving) and losing part of who I used to be.

She has done it all with no complaints and with only unconditional love. She is simply amazing. I’m not sure what I did to deserve her.

Shannon’s biggest strengths are consistency and loyalty. When she makes a commitment, whether it’s professional or personal, she sticks to it – and expects everyone to do the same. These qualities have allowed her to reach a position of great responsibility as an operations manager for a realty company. Her job is hard work and requires long hours but she does it in order to provide for her family. I admire her every day for her strength as a person.

Her personality is a mystery to most but not to me. She is loving, tender, somewhat adventurous, quiet and the funniest person I have ever known. She doesn’t know she is funny, but her dry sense of humor keeps me in stitches most of the time. She talks back to the TV, she figures out who did it on the ‘Who Dunnit’ shows long before the plot is revealed and she loves the ID network. We still laugh a lot, which is wonderful.

I want to thank her and all caregivers. Caregivers – I saw how you took care of my mother, my father, my grandfather and my wife’s grandmother. It takes a certain special type of person to be able to do what you do, but you do it day in and day out. You never complain, you always wear a smile and you’re always there, taking care of your own family or of other families you treat like your own. You are unbelievably wonderful people and for those who are unable to thank you themselves, I thank you!

We can honor caregivers and care partners by giving them something they probably need or deserve – a period of time, whether it’s a few hours or a few days, to have time to relax. This could be a spa treatment, a weekend at a hotel, a manicure/pedicure. Don’t be afraid to ask a caregiver what they want so that you can give them something you know they would enjoy.

I want my care partner Shannon to know that plain and simple, she is my hero.

Shannon, I hope you never feel that the things you do go unnoticed or unappreciated. The vows we took were for better or for worse, in good and bad times, in sickness and in health. You probably never thought it would go to this extreme. Just know, if the tables were turned, I would be right where you are now. I love you unconditionally and you show me that love every day. My only hope is that you can see and feel it in return.

 

About the Author:  Brian LeBlanc was diagnosed with younger-onset Alzheimer’s in 2014 at age 54. He carries the APOE-e4 genotype, a genetic mutation which increases the risk of developing Alzheimer’s disease. His mother, father, and maternal grandfather have all died with symptoms of the disease. As a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group, Brian would like to raise awareness of the impact of younger-onset Alzheimer’s disease and be a positive example for other newly diagnosed individuals. His mantra is, “I have Alzheimer’s, but it doesn’t have me!”

Brian and Shannon live in Pensacola, FL. Together they have three children.

 

 

Oct 272015
 
danb

Photo credit: Heather Weston

Two years ago, when B. got her diagnosis, I made the same assumption that almost all newcomers to this challenging subject do. I thought it was all about the loved one who now had Alzheimer’s. She was the patient — or maybe the word I used more often was “victim.”

She was, and she is. But the challenge, I came to see, was just as formidable for me as it was for her. I don’t mean to sound cavalier here. Any of us, given a choice between having Alzheimer’s and caring for someone who does, would choose the caregiver role. I know that. I don’t ever minimize what B. faces every day, and how that challenge grows. But being a caregiver is hard. It is definitely the hardest thing I’ve ever done in my life. Growing up in Bed-Stuy at the time I did, breaking out of what was one of New York’s toughest inner-city neighborhoods, finding jobs as a very black man in a white man’s world — that was easy compared to taking care of a wife with Alzheimer’s, day by day, hour by hour. Here are a few helpful suggestions I’ve learned through experience.

    • Read the literature. I know that sounds obvious, but the fact is that most caregivers read very little. For one thing, they’re occupied with caring for their loved one. I get it! But frankly, most feel they’ve done enough by just listening to what their doctor tells them. They really haven’t. There’s so much to learn in terms of diet, activity, ways of coping . . . I think you can get a lot of that from our book, but I’d urge you not to stop there. Knowledge helps. It helps your loved one, and it helps you, with specific suggestions on what to do and what not to do.
    • Learn as much as you can about the disease. Maybe this seems like extra homework, but I got fascinated by learning the science of what Alzheimer’s is. I found it oddly comforting to know what doctors have figured out so far—more so to learn what the paths are to a possible cure.
    • Get in touch with your local branch of the Alzheimer’s Association. There are many wonderful organizations out there, from those promoting research and drug trials to commonsense help for caregivers, and we list a number of them in our book. But the national Alzheimer’s Association is in a class by itself—a fount of information, with an unequaled network of local branches to offer all kinds of hands-on help.
    • In groups of three or more, don’t treat your loved one as if she doesn’t exist, and don’t refer to her in the third person. The most loving and well-intentioned caregiver can find himself icing his loved one out of the conversation—with her sitting right beside him. It’s understandable, especially if the disease has progressed to the point where the patient has lost all ability to follow the conversational thread. But even severely impaired patients tend to sense when they’re being excluded— I’d put that more in the spiritual than scientific realm—and to feel hurt and humiliated as a result.

Visit bsmith.com to learn more about the book Before I Forget.
  • Don’t try to finish a loved one’s sentences. Give her time to respond. If she can’t retrieve her thought after a long pause, gently prompt her with what you think she’s trying to say. When this started with B., I made the classic mistake of letting my frustrations get the better of me. B. would let a sentence trail off into space, and I’d jump in to finish it for her. As soon as I knew what she was trying to say, I’d go there first. I still get impatient—I’m only human—but I’ve gotten a lot better at letting B. take the time she needs. I try to be zen-like about it. I mean, after all, what’s the hurry?
  • Avoid being condescending or critical at all costs. It’s debilitating and simply doesn’t work. I tell you this from bitter experience. Before Alzheimer’s, B. and I never— ever—argued. Frankly, that wasn’t because we were both so level-headed. It was that B. was! I was the one with a temper; B. was just gracious enough to keep me calm. When her Alzheimer’s came on, B. was still calm—but I no longer was. I was mad—at fate, and yes, too often, mad at B. Slowly, I got over that and came to terms with the obvious. Alzheimer’s wasn’t B.’s fault, and my lashing out at her—when she forgot something I told her ten minutes before— was of no help or justification whatsoever. Here’s one thing that helped me: I started consciously keeping my conversation with B. to questions that could be answered “yes” or “no.” Instead of “What would you like to wear today?” I’d say “How about these black pants?” In the supermarket, same thing. Not “What shall we have for dinner tonight?” but rather “How about this salmon? With a little salad?” It made for a much happier B. She could participate in the decision and not feel left out—or, worse, hurt by a snappish remark from me.
  • Above all, never lose sight of the dignity within the human being who has the disease. This is so, so critical. Maybe it’s the most critical point of all. Patients get worse with Alzheimer’s—so far, that’s the unavoidable truth, without exception. As they do, they lose physical mobility along with their functioning minds. This is a terrible, terrible process for them—and for those who love and care for them. But even those with severe Alzheimer’s retain their humanity and remain, somewhere inside, the people we knew. We have to honor that, always, even to the last, both for their sakes and ours.

About the Author: Dan Gasby is husband and care partner to supermodel, restaurateur, magazine publisher, celebrity chef, and nationally known lifestyle maven B. Smith, who has younger-onset Alzheimer’s.

Dan has been a television media sales executive and a television producer for both network and syndicated programs. He helped publish and launch wife B’s eponymous magazine and helped cofound her lifestyle retail brand.

 

 

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