Jan 212016
 

“Was I there, too?” Mom asks as my dad tells us about a concert they attended Monday night.

“Of course,” he responds.

“I don’t remember,” Mom replies. “I don’t even know if I’m here or there.”

We laugh, because in context, it’s funny. What it means, however, is that Mom is aware of her memory loss, of her dislocation from time, of her inability to live beyond the moment.

We’ve accepted this about her. And in fact, as Mom’s abilities decline, some things are easier. Mom doesn’t fight me anymore when I need to cut her nails. She willingly holds hands when we cross the street. And, whereas before she rejected sandwiches for lunch, she happily eats them because we now cut them into bite-sized bits she can eat with a fork.broccoli

What remains a mystery is how Mom, who sits on the sidelines for most conversations, suddenly enters the fray with a zinging comment. Here’s an example from this afternoon.

As most of their bills are in Hebrew, Daddy and I have taken to going over them together to make sure he understands them. He has a pile of papers waiting for me when I get there, and as we sift through them, I notice that one whole stack is not for him. The address is right, but the name on the letter does not correspond to anyone in their apartment. When we finally decipher the last name (Hebrew is written without any vowels, so it is sometimes a guessing game as to how to pronounce words), Daddy realizes the papers are for their upstairs neighbors, the Pe’er family.

“I think they’ve both died,” Daddy says, “although, maybe she’s still alive.”

And then Mom, transliterating from Hebrew to make a joke: “What a pair they are.”

Zing.

Mom’s brain is functioning.

We laugh long and hard over that joke. It is a small celebration of her vitality and it makes us feel as if our efforts to keep her active and engaged do have an effect.

As I gather my things to head home, Mom tells me she’ll miss me. “I’m like a yo-yo,” I say. “I’m leaving now, but I keep coming back.”

“But when will I see you?”

“I’ll visit next week,” I promise. Mom is still with us. I want to experience that for as long as I can.

The thing about broccoli is that it’s good brain food. The broccoli kugel featured here is in honor of Mom’s phenomenal brain.

Broccoli Kugel

If you’re not overly fond of broccoli, you can substitute almost any other vegetable—cauliflower, squash and carrots, spinach, even cabbage—and still create a hearty vegetable side dish. My favorite: broccoli. This works with fresh broccoli, too.

800 grams (1.7 pounds) frozen thawed broccoli, chopped

1 large onion, chopped

3-4 cloves garlic

4 eggs

4 Tbsp mayonnaise

1 Tsp mustard

4 Tbsp flour

Salt and pepper to taste

Paprika to sprinkle on top

Directions:

Sauté onions and garlic until they begin to brown. Let cool. In a large bowl, mix eggs, flour, mustard and mayonnaise, salt and pepper. Add broccoli and onion mixture. Pour into a small casserole dish and sprinkle with paprika. Bake at 350° for 40 minutes or until browned on sides and top.

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.

 

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Nov 102015
 

When I was in graduate school, I lived in an apartment with two roommates, and the three of us rotated the household responsibilities of cleaning and cooking. During a week when it was his turn to cook, my one roommate told us about a free dinner on campus. At the time, I was seeing a girl I had been dating throughout college, but that night I talked for two hours with a girl that sat across the table from me at the free church dinner. The girl’s name was Juanita, and I was intrigued by her.

That same night, I broke off the relationship with the girl I had been dating. Unbeknownst to me, Juanita, who was planning to be a single career woman, ran back to her dorm, threw her books on the floor and angrily declared to her roommate that she had met the man she was going to marry.  (She was furious because she didn’t want to get married.) Three months later, we did, and we have been married for 53 years.BOBW

I joined the Air Force and Juanita and I traveled all around the United States. We also spent four wonderful years in Germany. I served as a commander and also worked in the White House as a communication officer for President Jimmy Carter. Juanita and I had a very interesting and blissful life, along with a steady income.

What is different about our life now is that I have Alzheimer’s.

Juanita takes on more responsibility now as my care partner. There is more stress on her, and more guilt on me. I feel guilty that she has had to give up some of her life to be responsible for our lives. She doesn’t have as much “me” time, and although we spend more time together, we decided to give up life in a 3000-square-foot home to move into an apartment in a senior living community.

The wonderful thing about the community, however, is that we have a 125-resident support group, and there are quite a few couples like us. We have activities to participate in and new people to meet all the time, so our life is as good as it can be given our situation. Juanita leads a caregiver group that she started all on her own. Her previous work as a mental health counselor is a huge blessing for me and the others who participate, and she also gets a great deal of joy in helping people.

Looking back, we were more prepared than most.

As soon as Juanita noticed cognitive changes in my behavior, she encouraged me to see a doctor. The straw that broke the camel’s back was the “kitchen cabinet incident.” Juanita had asked me to get a pan from a cabinet I had been using for decades. She watched as I struggled to get it to open. I thought the door was stuck, and kept pulling and pulling. Finally, she said: “Honey – try the other side.” The cabinet opened immediately.

Juanita has been by my side every step of this journey since I was diagnosed five and a half years ago. I have a family history of Alzheimer’s and I knew the disease was potentially on the horizon. We were lucky in that we were somewhat prepared for it. I went to seminars and educated myself so that I was able skip the phases of anger, denial and grief and go straight to acceptance. Juanita was right there, ready to step into her new role, always so supportive and helpful. She is calm under pressure, intelligent, creative and bounces back quickly from any frustrations. She makes my emotional life easier by being so extremely patient. We still love to kid each other, although I now often miss the nuances. She is cheerful and has a wonderful sense of humor to this day despite how hard the situation can be on her.

I want her to know how much I love her. Caregivers and care partners don’t expect much appreciation, but they should celebrate the moments when they are recognized, because they deserve it. People with Alzheimer’s often go about life unaware of how much caregivers are giving and can’t show the appreciation for their sacrifice. So much attention is put on the person with Alzheimer’s instead of the caregiver, and I hope to see this change in my lifetime.

I want to see more formal attention given to the caregiver side of the house.

I don’t think that there can be ever be enough support for caregivers. Many people do not know how overwhelming and isolating caregiving can be. We need to support caregivers more now than ever and give them what they need.

Caregivers, stay patient. Don’t give up. What’s the old saying? “When the going gets tough, the tough get going.” There is so much expected of caregivers, and the reality is that they can’t be everything to everyone. Don’t let them fade into the background. Support them and let them know their worth. They are our lifeline. I know Juanita is mine.

 

About the Author: Bob Wellington was diagnosed with Alzheimer’s in 2010. He is a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group and participates in the Early-Stage Peer to Peer Outreach Program, making calls to newly diagnosed individuals.

Bob and Juanita live in Tacoma, Washington.

 

 

 

 

 

 

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 222015
 

1. Things that seem so important to us in our everyday lives just are not. Mom thought it was important that she follow the strict rules of her religion. She had to wear a skirt every day, as well as have her long hair in a bun. Mom never ever wore jewelry and rarely watched TV. Guess what? The aides put her hair in a ponytail, and she wears the Mardi Gras beads that she wins at bingo!
DileoneMom

2. Being angry at family and friends for not taking the time to visit Mom in the nursing home/assisted living is not beneficial to anyone. Everyone is doing the best they can. Maybe they won’t know what to say when they visit, maybe nursing homes make them uncomfortable and they don’t know what to do with that feeling. It doesn’t mean they don’t love her, they do. Forgive, and let your expectations of them go.

3. Alzheimer’s does not take away love. Love is too big. Mom loved her God a lot. Alzheimer’s’ hasn’t taken away that love either. She suffers from chronic back pain, and when I ask her how her back is, she tells me it hurts. And then says God is good to me.

4. All that matters is our moments. That’s how Mom lives now, in the moment. All the things we worry about for tomorrow, so much energy spent on pointless worries. All we have is this moment, this day. Stay there.

5. There is some joy in Alzheimer’s. Yep, I said it. Mom did not have to deal with the pain of losing a niece and nephew that passed in their forties, whom she was close to. She doesn’t think about who is paying her phone bill and when she needs new clothes. She doesn’t know her ex-husband passed away, or that a sister in California died from the same disease she has. She doesn’t know that her sister first stricken with Alzheimer’s is the one in the bed right next to her. Or that yet another sister is on the third floor of the same facility with the same disease. She does not know that a fourth sister is now in the assisted living next door with a form of dementia. That is a lot of pain she didn’t have to face.

6. We will be together again one day. Her mind will be clear, and she will see how much she taught all of us by having Alzheimer’s.

7. It’s OK to be wrong. It doesn’t matter who is wrong and who is right anyway.

8. You will have people along the way that will come into your journey simply to help you and then move on (Power of Attorney and Health Care Proxy were not the first things on my brain!).

9. Alzheimer’s disease is a family disease, not an individual disease.

10. I’m stronger than I thought I was. You were right Mom!

 

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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Sep 282015
 

Four years ago, Mom quit her job so that she could come help me with my twin boys after they were born. I was an exhausted first-time mom who had no clue what I was doing. It was a huge relief to have her by my side during that time.

I started to notice little things about Mom that were different; rather than read too much into anything, I figured that we were both just exhausted. Then the little things started to happen more often. After many doctor’s appointments and tests, my parents visited the Mayo Clinic. It was there, in September of 2011, that my mom was diagnosed with early-onset Alzheimer’s disease at the age of 59.mb1

I was stunned, paralyzed with fear. People that young didn’t get Alzheimer’s, did they? Would she wake up and just not know me? What is Alzheimer’s, really?  Now what? What do we do?

These were all questions that went through my head. To be honest, they still do. I lived in denial for a long time, doing more research than I knew what to do with. The doctors were wrong, I thought. Some days she seems fine!

It took me a long time to accept the “new version” of Mom. I would get so frustrated, not knowing how to comprehend the disease. I finally sat down with her one day after we put the boys down for a nap, and I asked her what it was like. I wanted to know. I wanted to understand.

mb3She tried as best as she could to explain her thoughts and feelings to me. We cried a lot; we still cry a lot. My mom is my best friend, and her diagnosis has been a long slow process for me. I knew then that I needed to do something to fight for Mom, and fight so I don’t have to live with this disease myself.  I needed to find a way to deal with what was happening and to surround myself with people that understood.

Since I can’t change Mom’s diagnosis, I decided to fight like crazy to change it for someone else.

This last weekend was my second time walking in the Walk to End Alzheimer’s in St. Cloud, Minnesota. Joining Walk to End Alzheimer’s is about more than just raising money for me. While it’s so important to fund research that leads to a cure, my biggest mission is to spread awareness. I want to educate people about what Alzheimer’s really is, and how the ability to complete daily tasks that so many people – including me –take for granted are a huge struggle for my mom and so many others with the disease.  Connecting with others in our community at Walk who understand what we are going through is so comforting, and uniting to make a difference is such a great mb2feeling! Being involved with Walk to End Alzheimer’s has been very therapeutic for me, because I know I am working hard to make a difference. I also know my mom is proud and grateful for what I am doing.

mb4

Our family has always been very close-knit; while it’s not always easy, we try to maintain traditions and create new memories, because we are in this together. We understand how each other feels. We are going to fight endlessly so that others don’t have to slowly lose their mother the way I am. This is not a disease that should be hidden or kept quiet. Alzheimer’s is taking over our population, and people need to know what’s happening. We need to talk about this disease. We need to help educate people. We need to Walk.

 

About the Author: Meghan Blenker, 30, is a mother of three. She Walks as Team Captain of Grammy’s Gang

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Aug 152014
 

When my mother Naomi was diagnosed with Alzheimer’s in 2010 at the age of 70, my father, Jack, actually started cooking for the first time in his life. Through the painful realization that we were losing our beloved mom and wife, we found humor in the situation. My father had actually entered the kitchen! This post is an excerpt from The Lost Kitchen: An Alzheimer’s Memoir and Cookbook, which chronicles the story of how my family struggles to maintain balance—and laughter—in the face of a devastating diagnosis.Rony Nathan Photography

Mom doesn’t remember the wedding. She doesn’t remember dancing with my new daughter-in-law or being photographed with her grandson the groom, or even swing dancing with her husband. These are the moments that shine in my memory. I will remember for her.

In the weeks leading up to the wedding, it was kind of fun to tell Mom every time we met that my oldest was about to get married. I’d show her the invitation and we’d count the days. She’d ask me about his bride, and I’d tell her how they met through their youth group, and that they’ve been going out since high school. “Have I met her?” she’d ask.

The morning after the wedding, it was already lost. Getting dressed in our finest clothes, putting on makeup, walking into the beautifully decorated hall. The emotional meeting of bride and groom after a week’s separation, the way my son cried with love and anticipation as he performed the bedeken, the veiling ceremony, and watched his lovely bride walk towards him under the chuppah, the canopy. The fraylich joyous dancing, the hugs and kisses from friends and family. All gone. As if it didn’t happen.

If I’ve learned anything about Alzheimer’s, it’s that though Mom’s past might be lost, and her future is, well, non-existent, her present is immediate. Every moment that she spent at the wedding was fully experienced. One of the absolute highlights in an evening of amazing experiences was when we presented Mom with a birthday cake for her 73rd birthday. The band came over and played “Happy Birthday,” then seamlessly switched to swing music. Daddy grabbed Mom’s hands and that was it, they were dancing as they love to do, twisting and twirling together in fluid motion. The whole hall was clapping and watching, and nothing else existed at that moment.

That’s one of the lessons I’ve been trying to learn from her: live the now fully. How do I feel? Exuberant! My son’s wedding was filled with blessings. And I feel sad. We’ve accepted the terms of this disease. We’ve taken on her care knowing what’s to come. It doesn’t make it easier to watch her deterioration, but it does mean that we are prepared to handle what comes next. We’ve already steeled ourselves emotionally to the changes she’ll continue going through. Holding conversations with her is getting particularly difficult. We have to supply the words that she can’t recall, and steer her to the conversation’s conclusion. So many people said hello to her at the wedding. She kept asking me who they were, how I knew them, what they were doing there. The trick is to stay patient and keep smiling. Being with Mom does not have to be sad; Mom is happy—even with Alzheimer’s.

I had several conversations this weekend that will stay with me for a long while. My cousin who spoke about the death of his father, my beloved uncle: “While you’re going through it, you don’t think about what you’re doing. You just do it. And you don’t think of yourself with pity. Afterwards, you look at your hands and you ask yourself, ‘Did I really bathe and feed my father? Did I really take care of him in such an intimate way?’”

My sister-in-law who has a degree in gerontology: “There are so many ways you can approach Alzheimer’s. Your mom is so full of life. She is a pleasure to be with, and that’s what you have to focus on.” She didn’t need to mention that her mother, my adored mother-in-law, is also having trouble remembering.

One of the hardest conversations was with my brother: “I don’t know when I’m coming back,” he said. “Mom’s sentences and thoughts are becoming disconnected. At this rate, she might not recognize or remember me.” My brother lives in California. I live in Israel. There’s a lot of geographical distance between us. “I’m sorry I’m not here to help you more.”

My brother does help. He calls daily to speak with Mom. He even made her a pictorial family tree for her to identify her kids and grandkids. I told him it wasn’t worth being sorry, that regrets are the past, and the past is over. But I am sorry. I’m sorry he’ll miss the joy of being with Mom while she is still so present. Nothing can replace that as she slips into forgetfulness.

Challah Recipe

In preparation for the family Shabbat after the wedding, I took the time to bake challah, traditional bread eaten on Shabbat and other Jewish holidays. My signature challah is a combination of white dough and whole wheat dough arranged in a circular baking pan with white and black sesame seeds sprinkled on top. I also like to braid challah with four-strands. When you make challah every week, you start to sense how the dough will turn out. If you are trying challah for the first time, there are a few tricks you can employ to make sure it turns out well.Challah3

  1. Adding a little oil to your hands allows you to knead the dough without it sticking.
  2. If it is too sticky, add more flour.
  3. Whole wheat flour needs more water than white flour to become dough. Don’t be shy about adding more than the recipe calls for, but add it in small amounts.
  4. Let the dough rise in a warm place like the top of the refrigerator.
  5. If the dough hasn’t risen much after two hours, kneed it, shape it, and when you’re ready to bake it, bake at a low temp (200°) for about 10 minutes before you turn up the oven to 350°.

 

Ingredients:

For the two-toned white and brown challah effect, you need to make this recipe twice, once with white flour and once with whole wheat flour.

8 cups white or whole wheat flour

1 cup sugar (can use brown sugar)

1 tablespoon  yeast

1 tablespoon salt

1½ to 2 cups warm water

½ cup vegetable oil

1 egg for the dough

1 egg for brushing on top

Sesame seeds

Directions:

In a large bowl, mix flour, sugar, salt and yeast. Make a large indentation in the mixture. Pour warm water, oil and egg into bowl. Using your hands, mix until you form a small ball of dough. Lift dough out of the bowl and knead on a floured surface until the dough becomes uniform and smooth. Place dough back in the bowl and coat with a thin layer of oil. Cover bowl and let rise in a warm location for two hours until dough expands in size. After two hours, knead dough until all air bubbles are gone. Divide and shape dough into braided or rounded challahs. Place on a baking sheet (covered with parchment paper ) and let rise at least another hour in a warm location. Just before baking, brush top of challah with beaten egg and sprinkle with sesame seeds. Bake at 350° for 20 minutes or until bread becomes golden brown.

 

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.

 

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Jun 182014
 

My mom has Alzheimer’s.  And it’s not easy.

Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong.

I was born when my mom was 37 and my dad was 41.  They had already “finished” their family – my sisters were 17, 15 and 13 – but welcomed the surprise.  My mom was involved in everything in our little town, from Rotary Club and the school board to attending college while working full time.  As the matriarch of the family, everyone in town knows her.  The entire family, including Dad, look to her in order to be in the know.



Thanks to you and your votes, the Alzheimer’s Association won a $75K donation in the DSW Leave Your Mark contest.View video

So we weren’t expecting it when we noticed she was not quite on her game.  She was forgetting things. As many tend to do, we attributed it to old age at first.  Because I wasn’t seeing her weekly or even monthly and now lived two hours away, I noticed more dramatic changes than my father and sisters did. We realized that mom should see a specialist, and once she did, we learned what we had feared – mom had Alzheimer’s.

For a while, Mom didn’t want anyone to know.  She was a well-respected community leader still serving on the school board.  As a family, however, we needed support as much as mom did. My sisters and I began researching and reading whatever we could to learn more about the disease; what we should expect, how we should begin planning.Mom n me laughing

I came across the Alzheimer’s Association’s website and started looking for local meetings that I could attend in order to educate myself and my family. I registered for the Walk to End Alzheimer’s and got my family involved.  Mom finally became open to sharing her diagnosis and began “letting go” of some of the things she had always done and accepting help.  This was not easy for her to do, but my mom is strong.

I get my strength from her. We aren’t victims of this disease. We are fighters.

Each of us girls has our strong suit when it comes to taking care of our parents.  From daily home maintenance like mowing the lawn and keeping track of medications to legal planning, paperwork and research, we all have our role.  My dad continues to be my mom’s primary care giver, but as he is not in good health, this wears on him.  But he would never complain, because that’s not what he does.

For me, connecting with the Central Ohio Chapter of the Alzheimer’s Association has provided the support and education I need to face this disease. When I attended my first monthly “happy hour” meeting, I met others like me – moms with young children who care for a parent with Alzheimer’s.  Two of those women continue to be part of my personal support system.  We are all in very different stages now, but when I have a bad day, I can message or text them, and they understand what I am going through like no one else in my life.

Me and Mom St JOne of these women invited me to go to some classes with her that would help me understand what my mom was going through using role play.  At first it seemed kind of silly, but boy did I learn a lot about how I was making things worse when I interacted with my mom! Now I try not to correct her, and I try to understand the frustration she must feel when she recognizes that she is forgetting things.

Knowing about what resources are available has helped me in other ways, such as researching financial advice in order to hold onto the childhood property that has been in my family since our grandparents came to America from Czechoslovakia.  For me, planning and understanding how to have these difficult conversations with our family as a whole has been vital.

And as for mom? She benefits from talking to others with the disease at awareness meetings. Seeing friends in her community decline due to Alzheimer’s is difficult, but it helps her prepare for the future.  Meeting with people who are so driven and determined to defeat this disease gives us hope. Advocates with no personal connection to the disease who speak in local meeting provide assistance and news. Everyone plays an important role.

I’m a doer. And as a woman, the daughter of someone with Alzheimer’s and a mother, I know something needs to be done. I don’t back down. I am not embarrassed to ask for help. I’ve developed control so that I don’t allow this disease to make me a victim. I am never a victim… I get that from mom.

About the author: Patti Gilligan, a director of change management at DSW Designer Shoe Warehouse, nominated the Alzheimer’s Association as one of seven charities competing to win a $75,000 donation in DSW’s Leave Your Mark program. 

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Nov 252013
 

When it comes to caring fwoman sleeps on the sofaor a parent, spouse or other loved one, sleep is not for beauty. It is essential to maintain health and the energy needed to be a caregiver. Uninterrupted, restorative sleep (7 to 9 hours) is recommended by most experts.

But for many of the nation’s 65 million family caregivers, sleep is an elusive luxury.  In fact, a National Alliance for Caregiving (NAC) study on caregiver health risks found 87 percent of those caregivers surveyed suffered from insomnia.

If you suffer from insomnia or sleep deprivation, you are at risk for numerous health issues. According to the National Sleep Foundation (NSF), more than 50 percent of people older than age 65 suffer sleep disorders that ultimately shorten their lives. This deprivation of sleep is called sleep debt. In an interview with WebMD, Susan Zafarlotfi, Ph.D., clinical director of the Institute for Sleep and Wake Disorders at Hackensack University Medical Center in New Jersey, said, “Sleep debt is like credit card debt. If you keep accumulating credit card debt, you will pay high interest rates or your account will be shut down until you pay it all off. If you accumulate too much sleep debt, your body will crash.”

Insomnia typically is a function of not being able to relax our minds and our bodies. To get some sleep, try these tips from Dr. Lawrence J. Epstein, associate physician, Division of Sleep Medicine at Harvard University:

1. Create a sleep-inducing environment: a dark, quiet, comfortable and cool room.

2. Do not use your bedroom for anything other than sleep or sex. No television, no laptops.

3. Make sure you do not eat at least two to three hours before bedtime, and avoid caffeine or alcohol close to bedtime. Note that smoking can cause trouble sleeping.

4. If you are tossing and turning at night and you cannot get those eyes closed, try drinking green or chamomile tea before bed or put a lavender pillow near your head to aid relaxation.

5. Create consistent sleep and wake schedules, even on weekends. Our bodies have internal clocks called circadian rhythms that synchronize our active and rest states with biochemical reactions in our bodies. Circadian rhythms are based on light/dark cycles, with light having the most impact on our ability to get to and stay in restorative sleep.

For caregivers, it is time to awaken to the fact that sleep may be your best medicine.  Sleep well.

Excerpted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling (Balboa Press).

 

About the Author 

Sherri Snelling, CEO and founder of the Caregiving Club and author of “A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care,” is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.  She is the former chairman of the National Alliance for Caregiving.

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Jun 212013
 

the longest day, ACBLMy daughter and I experienced the longest goodbye during my husband’s decade-long struggle with Alzheimer’s dementia. Henry died in March of this year.

Henry taught me to play bridge more than 30 years ago when we were courting. My daughter, as a little girl, learned how to play the game while sitting on his knee.  Playing bridge became a tradition with my family as we played weekly with friends, and whenever we went to California to visit Henry’s mother (also a very fine bridge player).

All day today, people across the country are doing the things they love as part of The Longest Day, an Alzheimer’s Association event to raise funds and awareness.  Some will participate by hiking, cycling, swimming, sailing, bowling, dancing, painting, running, skateboarding or rock climbing. We are playing bridge.  The Longest Day gives my daughter Kristen and me a chance to honor his memory in a very tangible way.  I am very grateful that Donna Compton, the owner of our bridge club in Dallas, chose to participate in this very special day.

Henry was a brilliant scientist, unfailingly kind and interested in making a difference in the world and in people’s lives.  He was diagnosed with posterior cortical atrophy, a variant of Alzheimer’s, in 2006; but continued working until May of 2009, when he retired after 31 years with the United States Environmental Protection Agency—determined to continue living according to his goals instead of giving in to depression or desperation.  He and my daughter stayed active in the community, especially with the YMCA for which they both raised thousands of dollars each year during the Y’s scholarship fund drive. Before he passed away, Henry made the decision to donate his body to the University of Texas Southwestern Medical Center Memory Research Unit.   Until the very end, he was committed to doing what he could to make a difference.

Participating in The Longest Day allows me to be part of a movement and most importantly, carry on my husband’s legacy for the study and eventual eradication of this dreadful disease.  My involvement in this event has given me a new perspective on everything we’ve gone through over the last few years. As I play bridge, I will reflect upon the truly blessed life we had and the nobility with which my dear husband faced his inevitable decline.

I feel as if I owe my service to Henry, to my community and to all of those suffering with Alzheimer’s disease as well as their loved ones.  Seeing our community and others come together shows me that this disease affects everyone in some way.  Sharing our stories, journeys and supporting one another has been an incredible experience. I can only hope that what we do today, in this unified effort, will truly have a lasting impact for the Alzheimer’s Association and the fight to find a cure for this devastating disease.

About the Blog Author: Laura Onsgard lives in Dallas, Texas.  She is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to raise funds and awareness for Alzheimer’s care, support and research.


Jun 132013
 

Christina and Giovanni It was a perfect summer evening.  The sun was just starting to go down and there wasn’t a cloud in the sky.  I was home from college on a visit to introduce my parents to my new boyfriend (my now husband).  We sat on our patio, enjoying our evening together.

My father, Giovanni, summoned me into the kitchen through the window overlooking the patio.  I excused myself, assuming he wanted some help in preparing the food and getting the table set for dinner.  While I was correct that my father needed some help in the kitchen, I was not prepared for the kind of help he was asking for.

My father, an Italian man and one of the best chefs I have ever known, was asking ME for help on how to cook his signature pasta dish that I had requested he make for this occasion.

I could see the sadness and sheer terror in his eyes that he was asking me for assistance on something he previously could do with his eyes closed.  Immediately, I sprang into action, telling him not to worry, assuring him that we all have days like this sometimes, and that it had been a long time since he had made the dish.  But deep down, I knew something was very wrong.  It wasn’t long after this occasion that my father was officially diagnosed with Alzheimer’s disease.

More than six years have passed since that summer night.  During that time, my father gradually forgot every pasta dish he ever made; he forgot the simple daily acts we take for granted; the disease robbed my father of knowing that I was his daughter — and finally, of his life.

Here is what my journey with my father taught me: Alzheimer’s changes things, but there is still a person inside.  Even after this disease progresses, there are ways to share meaningful moments.

A special recipe to share

Make a tax-deductable donation to The Alzheimer’s Association and receive a downloadable recipe card of Giovanni’s signature pasta dish as a thank you for your donation.

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One of my favorite memories of my father is of my wedding day.  It was toward the end of his illness, and he was having more bad days than good.  I wasn’t sure he would be able to attend. He was having trouble walking at that point. But he made it – and something amazing happened.  Not only did he walk – he lit up.  He was back to being an entertainer and a host and he loved every minute of it.  We danced to Sinatra’s “The Way You Look Tonight” and he looked so happy.  We both were.

As my father’s youngest and only child in the United States, I always tried to be strong for him, and support him in any way that I could. Our time together has inspired me and shaped the woman I’ve grown to be.  My father’s journey affected my career choice. I now work for the Alzheimer’s Association, providing education and guidance to other families trying to navigate this awful and often mysterious, challenging disease.

Now that my father has passed away, the greatest gift I can give him is doing my part to help end this disease for other families. I hope that my effort to help others, I honor my father, who was one of the most gentle, kind and caring people I have ever known.

Happy father’s day, Dad. I love you and miss you.

About the blog author:  Christina lives near Chicago with her husband, two dogs and a cat.  They are expecting their first child later this year.  She works at the Alzheimer’s Association helping other families dealing with dementia. 

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