Jun 212013
 

My mom, whom we lovingly call LuLu, was diagnosed with Alzheimer’s in 2008. We have been through quite the journey ever since.  There have been challenging and scary times when we didn’t know what might lie ahead, and there have also been incredibly inspiring times, when we’ve been touched by others who readily jump in to help based on their own experiences with Alzheimer’s. purple sunset

When I heard about The Longest Day, a 16-hour Alzheimer’s Association event, I thought it was such a unique way to recognize the millions of people who face Alzheimer’s every hour of every day, and to raise money for such a great cause.  I decided to sign up and ask a few family and friends to join if they could, but I fully expected to cover the majority of the day on my own given that it is on Friday and most people are working.

I was so overwhelmed when the responses came back immediately.  “I’m in!” —one person after another.  Before I knew it, we had all 16 hours of the longest day of the year completely scheduled with activities in LuLu’s honor.

Love of Lulu 1

I could hardly sleep last night—I was so excited for today to get here! Our team, “For the Love of LuLu,” passed a “virtual baton” across multiple states. My college roommate Jenny started us off at 5:30 a.m. (bless her heart) doing aerobics in Chicago.  Then, my sister-in-law Terri walked her dogs in New Hampshire.  Next, I walked my dogs in Aurora.  LuLu LOVES dogs so we had several dog activities throughout the day!

My nephews Tyler and Mike both fished (in separate states), my sister-in-law Sue knitted in Michigan, and more folks walked in Texas and Illinois—including my cousin Lynda who gave LuLu her nickname when we were children!  My husband Tom and stepson Corey played/watched baseball, which is one of LuLu’s favorite sports since she supported all three of my brothers through their baseball years.

One of the most anticipated activities was performed by my friend Tami, who dressed up in a cowboy hat and line danced to John Denver, LuLu’s favorite musical artist.  :)

We’ve raised $3,550 so far and we aren’t stopping there!  One of our most memorable donations was from the kids in student council at the school where my sister-in-law Lynn teaches.  They held a talent show to raise money for Alzheimer’s and donated all proceeds to our team.  We affectionately now call them our “Little LuLus.”

Now, as the sun sets, we are hosting “The Longest Party” and serving several of LuLu’s famous dishes – cucumber sandwiches, deviled eggs and kolaczki cookies.  As we reflect on the day, we are inspired by how many people have come together in Lulu’s honor.  She is my hero, and I will continue to work to end Alzheimer’s until there is a day when no daughter has to watch her mother live with this disease.

Diane Leeming is the youngest of five children. Diane, her husband Tom, her stepson Corey, and their two dogs live in the Chicagoland area.  Diane works in Human Resources and is currently Senior Director of Organization Effectiveness for Kraft Foods Group.  She and her family and friends are participating in the Alzheimer’s Association The Longest Day™ , a sunrise-to-sunset relay to raise awareness and funds for the fight against Alzheimer’s. 


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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May 302013
 
lotus pose

Caregiving can be extremely rewarding, but all caregivers will eventually feel some degree of frustration, anger and guilt. These are all normal emotional responses to an incredibly emotional journey.

As a caregiver, you may feel frustrated and angry at your chaotic life, or your lack of control over the disease’s progression. Anger often evolves into guilt. You may feel like there isn’t a light at the end of the tunnel, and have the guilty thought, “how much longer can this go on?” But understand, feelings can’t be denied. They can however be changed to some degree by adjusting your perspective; for example, you may feel less frustrated with your loved one’s acting out if you can remind yourself that they are not doing it on purpose, it is part of the disease.

Feelings can also be softened by certain self-care strategies. Journaling your feelings and daily relaxation techniques can be helpful. Identifying guilt triggers can also help. Does missing a child’s activity make you angry, with guilt setting in as you are later abrupt with your loved one? Maybe you need to find a Plan B so you can balance caregiving with your other roles. Respite is a great strategy to reduce guilt.

Are you feeling guilty about thoughts of sending Mom to a care home because you can no longer do it all? The thing you need to remember is that there is a difference between caring and doing. You may love. You may care. But at some point, sooner or later, you won’t be able to do. And you need to figure out a way to live with that. Those “unable to do moments” may come in increments; today you may need a respite day and decided to send your spouse to day-care for the day. A month from now, you may need to incorporate day-care twice a week in your caregiving calendar. All of that’s OK. The important thing is that you try and identify those points, those limitations you can’t get beyond, prior to actually being confronted by them.

So how do you do that? First, get support. Join a support group, if possible focused on the disease stage of your loved one. Participate in the AlzConnected online support caregiver guiltforum and read everything you can. Share your feelings and gain others’ coping strategies. It will help. Another tip, live in the day; focus on any positives from that single day. Look for a sign of your loved one’s remaining personality – perhaps a smile in hearing music – and connect with that. Prepare for, but don’t dwell on the future. Don’t just grieve for all the losses, but reflect on the good memories, maybe by sharing a photo album with your loved one and others. Let go of unrealistic expectations. “I should never take time off to enjoy a movie with friends when it upsets Dad so much,” is just not realistic in the long haul.

Bottom line is to listen to your feelings and know they are normal. Focus on the helpful and positive differences you have made in your loved one’s life, not on the things you didn’t do. And remember, as the disease progresses and you find yourself no longer able to have your loved one at home, that isn’t giving up. It is just a different way of caring.

About the  author: Stefanie is a family care specialist who blogs regularly for Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Stefanie, click here.

This post originally appeared on www.alzheimersblog.org.

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Jul 302012
 
Photo courtesy of Kristine Walsh

Caregiving blogger Sherri Snelling spoke to actors Jill Eikenberry and Michael Tucker about their journey in caring for Jill’s mother who has dementia.  At the heart of their story is family and how “eat, pray, love” may be their new catchphrase when it comes to caregiving. 

What struck me the most when I spoke to Jill Eikenberry and Michael Tucker – her partner in marriage, career and life – was that in all things they are a team.  We even did the interview with the two of them together, at their suggestion, and it gave me a glimpse into how their special bond of support, respect and caring for each other is a recipe for all couples who face a tough caregiving situation.  In fact, their story is about love of family and food and the ingredients needed to keep it all cooking.  Jill and Mike are like salt and pepper shakers – two distinct personalities and characters – but you never pass one without the other.

We all watched them as one of our favorite TV couples in the 80s and 90s in their roles on the Emmy-winning series L.A. Law (what boomer woman can forget the famous Venus Butterfly episode?).  Since then, both Mike and Jill have thrived as solo artists – Mike as an actor and as an acclaimed author, and Jill as a continually sought-after star on stage and screen with her latest turn in the movie, Young Adult.   However, it is when they are performing together – whether it is playing the couple in Broadway’s Love Letters, or caring for Jill’s mother with dementia – that they really are at their best.

 Our House in Umbria

For many years, New York City-based Jill and Mike, have been vacationing with friends – sometimes for weeks, other times for months – in the lovely Italian countryside in the Spoleto Valley of Umbria, Italy.   This is where the couple recharges – the sumptuous food that infuses Mike’s meals, the chilled wine, the warm people, the beauty of the olive trees and the vineyards versus the urban jungle – it is their version of Cinema Paradiso.

It was on one such trip about six years ago that Jill and Mike went from the calm of their Italian reverie into the storm of caregiving.  Jill’s mom, Lora, was 87-years-old at the time and had been living in a Santa Barbara, Calif., assisted living facility for several years with her husband, Ralph.  Although Lora had been hard of hearing for more than 40 years and had been experiencing some memory lapses, she was in pretty good health for an octogenarian.  But Jill had recently grown worried.  Her mom had started having paranoid fantasies according to Ralph and she had survived a fall, which according to the Centers for Disease Control puts 2 million seniors into emergency rooms every year, and Ralph was not in good health.  Just a few days into their latest Italian sojourn, Jill and Mike got the call that Ralph had died.

“All of a sudden I felt so far away,” says Jill.  She had been anxious of leaving her mom before this trip and now the guilt washed over her for not being by her mom’s side.   As the weeks rolled by after Ralph’s funeral, Jill’s daily phone calls to her mom could no longer bridge the 3,000-mile distance.   After a few in-person visits and more falls, it became clear to Jill that her mother needed more care. But, moving her into the assisted living’s dementia care center seemed wrong.  Jill still was not sure Lora was “there yet,” Lora would be isolated from neighbors and friends and as Jill says, “It just wasn’t family.”

While at first Mike felt some resentment as his Umbrian dreams were put on hold and his concerns mounted about the toll this would take on his wife, he said, “Jill’s focus was on her mom but my eye was on Jill.  My new job was to help her do the right thing.”

 Mamma Mia!

One of the toughest decisions for caregivers, especially those 7 to 8 million long-distance caregivers of older parents, is wondering whether it is better to have them live in a special facility that can provide the care they need or move them into your home or closer to you so that you can care for them.

“My mom was calling people at all times of the night, wandering off and eventually it got to a point where she was physically attacking the nurses caring for her after a bad fall,” says Jill.  “One night we went to dinner with our son Max, and he said what I had been in denial about, ‘you have to move Lolo to New York City.’  At that moment I looked over at Mike and he just nodded and I knew this is what we had to do.”

Many caregivers of older parents, even those who are married or who have siblings who can help, often tell me they feel “all alone.”  While Jill is an only child, the secret ingredient in her caregiving situation is that she never had that feeling – she had Mike.

“It was a huge moment in that restaurant when I looked at Mike and I just knew no matter what, he was going on this journey with me,” says Jill.  “Believe me, the last thing Mike wanted to do was have my mother in our lives every minute.  Even though he loved her, Mike felt my personality changed, and not for the better, when I was around my mother.” Now, not only would Mike have Lora in the same city but he would have to live with the “two Jills.”

What came next is something almost all caregivers face because so few families have that essential caregiving conversations before a crisis hits. (In fact, only one-third of all caregivers have had any conversation with their older loved one about long-term care.)   Jill and Mike had to look for the paperwork to close Lora’s bank and other accounts; they had to deal with Lora’s expired passport and driver’s license to get her on the plane to New York.  They also needed to find a memory care facility in New York City, and the list didn’t stop there.  After the move to New York, it eventually became clear that although Lora needed almost constant care, the facility that Jill and Mike found for her was not a good fit.

Caregiving As An Ensemble Show

The solution came when the apartment literally across the hall from Jill and Mike became available and they moved Lora (whom the family calls Lolo) in.  Around the same time both son, Max, and their daughter, Alison, from Mike’s first marriage, found themselves living in New York and helping out with caregiving duties.  Alison, who is a chef and personal caterer, cooks most of Lora’s meals, Max gives his parents some respite by playing companion to his grandmother (when he is not playing drums in his band) and two professional nurses round out the “a la famigla” that Mike had always envisioned as part of their Italian excursions but is actually now playing out in the Big Apple.

Photo courtesy of Kristine Walsh

“We could not have planned it better but going through this experience really brought us together as a family,” says Mike.  Besides the familial ties, Mike believes his gifts from caregiving are that he and Jill have become even closer and that he is now more realistic about his future and how he will want his family to care for him.  Jill told me that she feels caregiving has taught her to “just let things happen and to not be in denial because it doesn’t serve you.”   She also feels it has improved the communication she and Mike have and his support has allowed her to really discover who she was through this experience.

As the “Tuckerberry” family gathered recently for Lora’s 93rd birthday, Jill and Mike have proven successful as both co-stars on screen, in life and in caregiving.  When I think of Jill and Mike, I think of Julia Child’s quote, “…nothing is too much trouble if it turns out the way it should.”

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, 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 and is currently writing a book about celebrities who have been caregivers.

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