May 2012
April 2012
March 2012
February 2012
January 2012
Special Feature - Celebrating our mothers
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Meg Scheidler and Mardy Young
As families prepare to celebrate Mother’s Day on May 13, many daughters and sons will remember the mothers and grandmothers they have lost to Alzheimer’s disease. Others will visit their mothers and grandmothers with a tug at their hearts as Mom or Grandma tries to remember their names. For many sons and daughters, life is different because Mom has Alzheimer’s or another dementia. Some changes are challenging, but others have a positive side.
Meg Scheidler says her relationships with her entire family have evolved since her mother, Mardy Young, was diagnosed with Alzheimer’s disease. “We have all had to learn to communicate with one another rather than through her. Most significantly, my relationship with my Dad has changed as his role as a parent has evolved to engulf all of things that my Mom used to do,” Scheidler said. “It is much more open than it ever would have been if Mom was healthy today.”
Sunday will be a special day for Scheidler’s family. “Mother’s Day is still a day to celebrate my Mom and all of the wonderful memories that I have of her,” she said. “But, the difference is that she doesn’t realize now if our cards or flowers are a few days late in the mail.”
To help fight Alzheimer’s disease, Scheidler started a team for the 2009 Indianapolis Memory Walk® and continues to participate in the Walk to End Alzheimer’s™. “I started a team in order to feel like I was part of the solution in finding a cure for the disease,” Scheidler said.
Scheidler currently serves as Chair of the Indianapolis Walk Committee. If you would like to become a Team Captain, click here.
If you would like to share your story, email IN.Communication@alz.org
One-stop shopping for caregivers
Our 2012 Spring Caregiver Conferences offer families and professionals insight into a variety of topics, including Alzheimer's research, behavior and communication. This spring's conferences are scheduled to take place in Fort Wayne on May 10th, in Metro Indianapolis on May 11th, and in Merrillville on June 14th. Naomi Feil, A.C.S.W., will be featured at our Fort Wayne and Metro Indianapolis events. She will present half-day workshops on Validation Therapy, a practical method for helping individuals with Alzheimer's disease. In Merrillville, Diana Waugh, R.N., will explain how caregivers can manage challenging behaviors.
Associate Director of Early Stage Services and Care Consultation Denise Saxman, MSW, LCSW, urges family members and professionals to attend the upcoming conferences. “Naomi Feil is an engaging, world-renowned speaker on Alzheimer’s care and has been around for many years. We are excited to be able to offer her insight and perspective on communication and behaviors for caregivers,” Saxman said. “We will also have many exhibitors from area service providers available for ‘one-stop shopping.’”
You can register for the conference online, or call 800-272-3900.
"Things That Make You Go Hmmm??"
Have you heard about QUASH? QUASH is the Quest to Unravel Alzheimer’s Scavenger Hunt. Think of that reality TV show where teams race around the world, only this is in Indianapolis. The Alzheimer’s Association Greater Indiana Chapter provides the clues and maps; participants bring the brain power. QUASHers play in two to four person teams, answering trivia and completing challenges along the QUASH course. After the event on Saturday, June 16th, participants will party at the QUASH luau with free food, drinks and live music at The Rathskeller Biergarten.
Casey Brown learned about QUASH from her sister, Amy Pierce. Their grandmother passed away from Alzheimer’s disease. “It is sad to see someone suffer, but it is much worse when his or her personality changes, and they do not even know who you are anymore,” Brown said. Brown believes in supporting the cause while having a good time. “Dressing up, being goofy, and running around downtown figuring out puzzles is a nice way to spend a Saturday morning or afternoon.”
Sue Hill got involved with QUASH last year, after losing several family members to Alzheimer’s disease. Hill found creative ways to raise money. “I held a bake sale at my office. Several other associates participated, and I raised over $300," Hill said. “I also had an auction and raised just over $200.”
There is still time to register for QUASH! Put a team together today.
Chapter recognized for diversity initiatives
On April 24, 2012 the Minority Health Coalition of Marion County presented the Alzheimer's Association Greater Indiana Chapter with the Front Runner Award. Board member Anita Gaillard accepted the award on the Chapter's behalf. "This award is an important signal to the Chapter. It tells us we are moving in the right direction as we work to raise awareness about Alzheimer's disease in minority communities," Gaillard said. The Front Runner Award was given during MHCMC's 15th Annual Membership Breakfast Forum. This year's theme was "Alzheimer's: The Aging of America". "As Indiana's population becomes more diverse, we must work to make sure we are meeting the cultural needs of all those who could benefit from our services," Gaillard said. Next month, the Chapter will offer a special program on medical and legal issues in the black community in Gary. For more information, call 800-272-3900.
Hoosiers represent Indiana at 2012 Alzheimer's Association Advocacy Forum
Hoosiers were well represented at this year's Alzheimer's Association Advocacy Forum in Washington, D.C., which took place April 23 - 25. Advocates from Indiana met with lawmakers to emphasize the need for a strong National Alzheimer's Plan. During a lunch program, Health and Human Services Secretary Kathleen Sebelius addressed more than 700 Alzheimer’s advocates from across the country about the Obama administration's commitment to fighting the disease. At a star-studded National Alzheimer's Dinner, the Alzheimer's Association presented University of Tennessee Head Coach Emeritus Pat Summitt with the Sargent and Eunice Shriver Profiles in Dignity Award.
The attendees from Indiana were Mike Hatke, Jason Hatke, Jana Powell, Carolyn Cunningham, Jim Wilgus, Tom Bodkin and Michael Sullivan.
"The forum this year was amazing. Not only did I get to help fight for this cause, but I was able to help close to a thousand people, and close to a thousand people were able to help me," Jason Hatke said. "I met so many people who are doing so many great things to advocate for Alzheimer's. I am going to keep those bonds strong, and make myself a better advocate!"
Planning for next year's forum is already underway. It will take place April 22-24, 2013.
Forget Me Not Days
This spring, volunteers are once again collecting donations in exchange for Forget-Me-Not flower seeds to raise funds and awareness for the Alzheimer's Association. Forget Me Not Days was started by Bankers Life and Casualty Company in 2003. The national fundraising campaign has helped raise more than $2.4 million for the Alzheimer's Association. You can find volunteers distributing seeds at the following locations:
Saturday, May 19th, 9:00am - 1:00 p.m., Sullivan's Hardware, 4838 N. Pennsylvania Street, Indianapolis
Saturday, May 19th, 9:00am - 1:00 p.m., Sullivan's Hardware, 7021 N. Keystone Avenue, Indianapolis
Friday, May 18th, 8:00am - 4:00 p.m., Kroger, 3100 Meridian Park Drive, Greenwood
Saturday, May 19th, 8:00am - 4:00 p.m., Kroger, 3100 Meridian Park Drive, Greenwood
Friday, May 18th, 8:00am - 4:00 p.m., Kroger, 5810 E 71st Street, Indianapolis
Alzheimer's Association Awareness Night at Victory Field
Join us at Victory Field on Thursday, May 24, 2012 at 7 p.m. for the Alzheimer’s Association Awareness Night. The Indianapolis Indians will take on the Louisville Bats. Contact Kris Morrow with the Indianapolis Indians via email at tickets2@indyindians.com or by phone at (317) 532-6790 to purchase discounted tickets and sit with Alzheimer's Association supporters. Tickets are $8 each, and we want to encourage everyone to wear purple!
Eyeglasses in the freezer
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Individuals living with Alzheimer’s disease are known to put their belongings in unusual places. Walk to End Alzheimer'sTM Team Captain Ann Shaver said that is how she came up with the name of her team. “When you used to have a test to see if you had memory problems, they would always ask if you put things in inappropriate places, like eyeglasses in the freezer,” Shaver said.
Shaver has watched three loved ones struggle with Alzheimer’s. “I despise the disease…hate it, hate it, hate it,” she said. “You don’t know until you’re in it, how much you hate it.”
While many Walk to End Alzheimer’sTM teams have supported the Alzheimer’s Association year after year, new team captains may be wondering where to start. Deciding what to name your group can be a challenge. “I would say use something that means a lot to you. It doesn’t matter if it seems mundane. If it means something to you, you will go all in for it,” Shaver said.
Walk Captain and Alzheimer’s Association Greater Indiana Chapter Development Specialist Amber Michel would also advise participants to choose a meaningful name. Michel said her group’s name, “Peanut Butter & Everything,” celebrates her grandfather, who is living with Alzheimer’s disease. “When my mother and uncles were young, my grandmother went to college in the evenings, leaving Grandpa Jack to feed and put the kids to bed,” Michel explained. “Not being the best cook, but being the resourceful guy that he is, he started pairing his favorite food, peanut butter, with…you guessed it--everything.”
Whatever name you choose, your support helps us accelerate our mission to eliminate Alzheimer’s disease. Michel said the name is less important than the force behind it. Ann Shaver offers some encouragement to her fellow walkers. “Just keep going until we get this thing licked.”
Register for the Walk to End Alzheimer'sTM
Cutting-edge research in Indiana
For Martin Farlow, M.D., every day is a fight in the battle to end Alzheimer’s disease. Dr. Farlow has been involved in Alzheimer’s research for 20 years and believes we are in an exciting time. “There’s an explosion in knowledge, in technology, in capability,” he said. Dr. Farlow serves as associate co-director of the Indiana Alzheimer Disease Center. He is also Vice-Chairman for Research in the Department of Neurology at the Indiana University School of Medicine.
The Indiana Alzheimer Disease Center is one of 29 centers across the country funded by the National Institute on Aging to study Alzheimer’s disease and related disorders. Dr. Farlow said the center is currently involved in nearly a dozen studies and is accepting volunteers for several projects. He said he has seen some beneficial effects on participants. “We are very hopeful, but until we have a positive result, we don’t know,” Dr. Farlow said.
Dr. Farlow said a variety of drugs have been developed to try to get amyloid out of the brain. Beta amyloid is an abnormal protein in the brain commonly found in Alzheimer’s patients. Just as cholesterol medications are used to ward off strokes, Farlow said these new drugs would fight amyloid to ward off Alzheimer’s disease. Some studies being organized on a national level are directed at patients even before they develop cognitive impairment. “It is likely that patients will be treated in the future who are in the stage where there is amyloid present, but clinical symptoms have not yet started to occur,” Dr. Farlow said.
Making it easier
Kathy Russell and her 87-year-old mother, Barbara Stafford, know that caring for a loved one with Alzheimer’s disease is challenging, but they also found help, peace of mind, and joy throughout the journey.
“Mom and I said we need to make sure we understand. We didn't know that much about what we could do to help Dad,” Russell said.
Russell’s father, James Stafford, was diagnosed with Alzheimer’s disease in 2007. Barbara Stafford cared for her husband until his death in February of 2011. “We were married 64 years, 8 months and 4 days,” Stafford said. “I was never depressed or angry or overwhelmed during the time that I took care of my husband…I always gave him the best of myself. I had support.”
Stafford and Russell sought help and learned about the disease through the Alzheimer’s Association Greater Indiana Chapter. They both attended support groups and education programs. “We developed very close relationships,” Russell said. The family also utilized services offered by CICOA Aging & In-Home Solutions. They received meals, respite care, and other much-needed assistance. “It was good for me as well as for him,” Stafford said.
Looking back on their experience with Alzheimer’s disease, Stafford and Russell are able to see a positive side. “I was just thankful that the Lord blessed me with my health and strength to enable me to care for him till the very end. He had his pride and dignity,” Stafford said.
Russell, who is very active with the Black Nurses Association, is now helping to plan a special program to raise awareness about Alzheimer’s disease. “People just don’t know about the disease,” Russell said. Russell, a semi-retired nursing professor, knows that education is critical.
Click here for more information about the Chapter’s education programs.
Click here for more information about CICOA.
You are not alone
To know there are people who are living our struggles and carrying similar burdens can lift weight off our shoulders.
For Rita Hatke, the Alzheimer’s Association Greater Indiana Chapter’s Early-Stage programs provide her with comfort and clarity during what can sometimes be an overwhelming journey. Hatke’s husband, Mike, was diagnosed with younger-onset Alzheimer’s disease five years ago.
“I’ve got my sanity back. I think it [the program] saved my life, really,” Hatke said. “I needed someone to hold my hand and walk me through it.”
Gina Hayden’s husband, Chip, was diagnosed in March 2010. Like Rita Hatke, Gina Hayden found support through the Chapter’s Early-Stage programs.
“No one ever knows what it’s like until you experience it,” Gina Hayden said. Hayden said her husband likes attending the programs because they provide chances to socialize. “Any opportunity to go out, he enjoys it.”
It’s important for someone recently diagnosed with Alzheimer’s disease to know he or she is not alone. Becoming educated about Alzheimer’s disease can also help families cope and understand what to expect.
The Chapter offers a variety of programs for people in the Early-Stage of the disease. In Valparaiso, the Chapter has started a new support group for individuals experiencing the early symptoms of Alzheimer’s disease or a related dementia. A screening process must take place prior to attending the program.
Starting next month in Fort Wayne and Indianapolis, the Chapter will offer our “Learning Together” early-stage programs. “Learning Together” is a six week educational support program that covers many topics to help someone in the early-stage and their care partner. Individuals must also be screened prior to registering for this program.
“It is difficult for family members to discern what are signs of natural aging versus a more serious problem that might represent the Early-Stages of Alzheimer’s,” St. Vincent Health Geriatrician Pat Healey, M.D., said. “The earlier the diagnosis is made, the better it is, both for the person with the disease and the families who need to learn how to cope with future declines.”
Sixty diseases or physical disorders can cause dementia. Alzheimer’s disease is the most common cause. Symptoms are usually mild in the early stage of the disease, allowing most individuals to continue to do simple daily routines.
The Alzheimer’s Association Greater Indiana Chapter has also published the “Early-Stage Handbook” to help people with the disease and their care partners better understand their symptoms. The handbook also offers suggestions that may make life easier.
To register, get screened for programs, or order your copy of our Early-Stage Handbook at no cost, please contact Denise Saxman through our Helpline at 800-272-3900.
Bread and Butter
The Alzheimer’s Association Greater Indiana Chapter relies heavily on individuals like Ella Wagner to carry out our mission. For Wagner, volunteering is a way of life. She has dedicated a countless number of hours to fighting Alzheimer’s disease over the past 18 years. During her tenure, Wagner has watched the organization grow from a very small operation to one of the largest chapters in the country.
“It’s hard to believe. When I first came here, we had this little tiny office and I think there were maybe three people,” Wagner said.
Wagner, a retired nurse, became involved with the organization after receiving an invitation to serve on a state committee charged with developing a conference for caregivers and people with the disease. On a personal level, Wagner watched a family member struggle with memory loss.
“My father-in-law had dementia,” Wagner said. Back then, Wagner said Alzheimer’s disease was rarely discussed. “We didn’t even talk about Alzheimer’s. It didn’t even come into the conversation.”
Now, Alzheimer’s disease regularly comes into Wagner’s conversations. As a Helpline volunteer, she receives calls from concerned family members, caregivers and people with the disease.
“I hear such a variety of phone calls,” Wagner said. “So many times they’ll say, ‘God must have meant for me to talk to you today.’”
Wagner would like to see more caregivers and family members benefit from the Chapter’s services.
“I just wish there was some way more people could take advantage of support groups. I think it’s so helpful to know you’re not the only one,” Wagner said.
Wagner spends thirty hours a month volunteering at the Indianapolis office. “My husband jokes that I am a professional volunteer,” Wagner said. Wagner also contributes to a variety of other causes. “That’s what your parents teach you to do,” she said.
Staff members are grateful for volunteers like Ella. You might say they are the Chapter’s “bread and butter.”
If you would like to volunteer, please call our 24/7 Helpline at 800-272-3900.
February 2012 eNewsWhen is it time?
At some point during their experience with Alzheimer’s disease, many families ask the question, “How do we know when it’s time for a nursing home?” Unfortunately, there is no easy answer. It is important to remember that there is no “right” time for everyone. Each person is different.
For Diana and Dennis Dijak of Greenfield, the time to make that decision was March of 2011. Dennis Dijak’s disease had progressed to the point where a professional caregiver was coming to the home 35 hours per week.
“Mentally, I knew I had to do this. You go through guilt and wonder, ‘What if I’m making a mistake?’” Diana Dijak said.
Dijak said the week before she brought her husband to Morristown Manor, she tried to think of reasons not to do it. As much as she tried, she could not come up with a good enough reason to keep him at home.
“I think it was harder on me than it was on him. I think he adapted to it more quickly,” Dijak said.
Diana Dijak had spent many years taking care of her husband herself. She recalls seeing signs that something was wrong years before Dennis Dijak was diagnosed with younger-onset Alzheimer’s disease. He got lost when driving from Greenfield to Carmel. The Dijaks had banking problems and overdrafts, because Dennis Dijak signed up to make monthly donations to so many charities. He couldn’t seem to navigate through the Metro during a trip to Washington, D.C.
Once the Dijaks knew the problem was Alzheimer’s disease, Diana Dijak wanted to make sure she was educated. She said it helped to take advantage of the services offered by the Alzheimer’s Association Greater Indiana Chapter. “I went to as many groups as I could to try to understand what he was going to be going through. It’s still a shock when they get up one day, and they suddenly can’t do something that they could do a couple days before,” Dijak said.
By 2008, Diana Dijak had to take care of her husband full-time, and eventually, that took a toll.
“You get angry. It’s like when you’re trying to potty train a kid and they just can’t seem to get it,” she said. “By March of last year, I was beginning to see that he never knew if I was going to be the happy wife or the irritated one.”
April Wolford of Valparaiso remembers making the decision about a facility when she became concerned about her mother’s safety. It became increasingly difficult to know what was going to happen next.
“What’s hard is that there’s no way to predict it. You just don’t know. She lived alone,” April said.
One year and a half later, April said she is glad she decided to make the move and believes her mother is happier for it.
“It was hard for her to be home too,” she said.
You may consider several factors when determining whether to start looking for a facility. Some of these issues include safety, personal hygiene, financial concerns, caregiver health and wellbeing, nutrition and in-home options.
Information & Referral Coordinator Amanda Janz says there is no black and white answer. “Nobody will be able to tell you when it is time. Every caregiver has limits as to what they can and cannot do,” she said.
The Alzheimer’s Association Greater Indiana Chapter can help you better understand your options. You can call our 24/7 Helpline at 1-800-272-3900 for support.
Asking for help
Caregiver Laura Simmons found the Alzheimer’s Association Greater Indiana Chapter almost by accident. Last year, Simmons decided to go back to work and signed up with a temporary employment agency. She was pleasantly surprised when Kelly Services placed her as a receptionist for the Chapter’s Fort Wayne office. “I was totally floored. It was meant to be,” Simmons said.
Simmons believes her job placement was “meant to be” because since 2008, she has been caring for her mother, who lives with Alzheimer’s disease.
Like many caregivers, Simmons remembers seeing signs of Alzheimer’s disease long before her mother’s diagnosis. One of those signs was getting lost while driving. Simmons said taking away her mother’s keys created tension when her mother finally realized why she was no longer driving. Simmons said it seemed to dawn on her one day while they were shopping. Her mother had not been behind the wheel for months.
“She looked at me point blank and said, ‘You are the reason why I don’t have a car anymore,’ and I said ‘Yes,’” Simmons said. Transitioning to the role of caregiver was difficult. At first, Simmons stayed at home with her mother all the time. “I found that it was very stressful for me, because I wasn’t used to being at home,” she said.
Getting out of the house to work has been helpful, especially considering how much Simmons’ colleagues understand about Alzheimer’s disease. Simmons said she did not realize just how much the Alzheimer’s Association had to offer until she started working for the Greater Indiana Chapter.
“I was aware of the Alzheimer’s Association through the internet, but I hadn’t called or followed up, and that was probably my weakness… I should have,” Simmons said. “The wealth of information and resources that were made available to me could’ve helped me a long time ago.”
Simmons said it can be particularly challenging for African-Americans to reach out for support.
“I do believe that in the African-American community, there is a reluctance to admit problems of any type outside of one’s immediate family. There is usually some type of stigma attached,” Simmons said.
This reluctance to get help is not unique to any particular culture, but it is of even greater concern for African-Americans, who are more likely to develop Alzheimer's disease than Caucasians.
Associate Director of Community Services Tina Brooks said she has also seen a hesitation to seek outside support among African-American families who are struggling with Alzheimer’s disease.
“It is very challenging because minority cultures tend to keep everything in the home and use the family as a resource,” Tina said.
Brooks said she is encouraged to see more minority participation in major events like the Caregiver Conferences.
The Alzheimer’s Association Greater Indiana Chapter is hosting a special program on February 9th for African-Americans at our Indianapolis office. Call our Helpline at 1-800-272-3900 to register.
Research Volunteers Needed
Right now, we are in the midst of an exciting time. More than 100 research studies pertaining to Alzheimer's disease and related dementias are underway and recruiting volunteers.
For Heather and Art Wachholz, participating in a clinical trial for a possible treatment for Alzheimer’s disease just seems like the right thing to do.
“There are a lot of people working darn hard to find a solution, so we may as well be part of the process,” Art Wachholz said.
The Alzheimer’s Association wants to help more people benefit from the groundbreaking research that is underway. By volunteering for clinical studies, people with Alzheimer's and their caregivers can play a more active role in their own treatment, contribute to scientific discovery, and ultimately benefit future generations. It is public service in the best possible sense.
The Alzheimer's Association created TrialMatch because recruiting and retaining participants for clinical studies is now one of the greatest obstacles to developing the next generation of Alzheimer’s treatments. The immediate need for advances in diagnosis, treatment and prevention has led to an unprecedented call for clinical study participants.
Art Wachholz can understand why some people with the disease and their families may have difficulty participating in trials. For Heather Wachholz, who was diagnosed with younger-onset Alzheimer’s disease four years ago, extra visits to the doctor’s office can be overwhelming.
“There’s a lot of anxiety around it. It reminds her that she’s got the issue,” Art Wachholz said.
Despite the challenges that may come with trial participation, the Wachholzes would recommend TrialMatch to others.
"She feels like it’s helping,” Art Wachholz said.
Heather and Art Wachholz with their daughter and son-in-law Emily and Alex Malone (left) and son Will (right).
Use TrialMatch to find a clinical trial now.
Programs for African Americans with Alzheimer's Disease
Many Americans dismiss the warning signs of Alzheimer's, believing that these symptoms are a part of normal aging. They are diagnosed too late and miss the opportunity to get the best care possible. This is of even greater concern for African Americans, who are more likely to develop Alzheimer's disease than other populations.
Data indicates that in the United States, older African Americans are probably about twice as likely to have Alzheimer’s and other dementias as older whites and Hispanics.
African Americans also tend to be diagnosed at a later stage, postponing valuable opportunities for early detection and intervention.
The Greater Indiana Chapter is pleased to offer programs specifically for African Americans. One of the programs will be held in Indianapolis in February, in honor of Black History month. The other program will be held in Northwest Indiana in June. The programs will focus on medical and legal issues in the black community. Two presenters will share their expert advice on each topic and will give attendees an opportunity to ask questions.
Thursday, February 9th: 5:00 pm to 8:00 pm, Alzheimer's Association Office, 50 E. 91st Street, Suite 100, Indianapolis, IN 46240
Saturday, June 2nd: 9:00 am to 12:00 noon, Ivy Tech Gary, 1440 East 35th Avenue, Gary, IN 46409
For more information, or to register for this no-cost program, please call the Chapter's 24/7 Helpline at 800-272-3900.
A Story of Two Wedding Rings
Larry Gleeson was diagnosed with early onset Alzheimer’s disease in 2003. He was 62 years old. Larry’s wife Kay, a retired school teacher, has been his caregiver for eight years. Kay said she recalls noticing changes before Larry’s diagnosis. “He had trouble balancing the checkbook. He was disorganized. He couldn’t remember how to play cards,” Kay said. The Alzheimer’s diagnosis explained why Larry, an insurance adjuster, had forgotten important deadlines at work, why he could no longer solve math problems the way he used to, and why it took so long to change a light bulb.
When Larry was diagnosed, the Gleesons decided to travel as much as they could, while they could. As Larry’s disease progressed, the cruises and overseas flights turned into daylong bus trips.
On this rainy afternoon, Kay sat in her kitchen alone, describing her journey with Alzheimer’s disease. Larry was at daycare, which he attends twice a week to give Kay a chance to run errands. Kay said when Larry returns home, she thanks him for giving her those few hours of alone time.
At this stage, Larry can no longer carry on a normal conversation, but Kay can often understand what he is trying to say. “You learn to play this game,” Kay said. Such was the case when Kay realized Larry was trying to ask her a question last March. “He said he wanted to get me a ring, a big ring,” Kay said. Larry was trying to ask Kay to marry him. The Gleesons were married forty-eight years ago. “I got out the wedding picture just to show him and remind him that we were married,” Kay said. Larry seemed temporarily satisfied with the visual proof, but still wanted to get the ring. The following month, Larry and Kay went to Distinctive Diamonds to select a new ring. He picked out one they both liked. Kay now wears the diamond and gold band on her right hand. “He’s very proud of my ring,” Kay said with a smile.
Kay says most everything with a smile, but becomes serious when she explains the price she has paid to Alzheimer’s disease. “It’s very hard losing a spouse because you’re more of a mother figure, and all the decisions have to be made by me, with my daughters’ help,” Kay said. Coping with the disease has been a learning process for the Gleesons, their two daughters, and three grandchildren. The grandchildren call Larry “Peeps”. They have to be more gentle with Peeps now. Roughhousing and playing around can get dangerous, because Peeps doesn’t realize when he could really hurt someone.
Soon after Larry’s diagnosis, Kay became involved with the Alzheimer’s Association, Greater Indiana Chapter’s programs. Years of support groups and caregivers’ conferences have provided her with education, understanding, and compassion. “I have become good friends with people in my support groups and we support each other,” Kay said. The Gleesons also lean on their church community. Kay said it was helpful to open up about Larry’s diagnosis. “At first, I just told close friends,” Kay said. “It was such a relief.”
Larry has also participated in Alzheimer's Association TrialMatch, a service that makes it easy for people with the disease, caregivers, families, and physicians to locate clinical trials that may be helpful.
For the Gleesons, laughter may be one of the best medicines. Kay said when Larry recently came out wearing her Christmas sweatshirt, they both laughed. “I said, ‘Sweets, what am I going to do with you?’”
New Tools for Tough Conversations About Driving
Driving demands quick reaction time and fast problem solving. Due to the progressive nature of the disease, every person with Alzheimer's will eventually become unable to drive. The Alzheimer's Association recommends that families discuss driving before a crisis, ideally while the person with Alzheimer's is still able to participate in the conversation and decision-making process.
To assist with these conversations, the Alzheimer's Association has recently created four short videos depicting different scenarios for approaching driving and dementia. Watching the videos may give families an idea of how to start the conversation or how to respond to a particular objection.
Following each of the videos is a list of tips and techniques families can use when having the conversation about driving. The project is supported by a grant from the Department of Transportation's National Highway Traffic Safety Administration."Talking to loved ones who have Alzheimer's disease about handing over their car keys can be difficult, especially if the individual is unable or unwilling to recognize their declining abilities," said Administrator David Strickland of the National Highway Traffic Safety Administration. "We are proud to have partnered with the Alzheimer's Association on the development of these important tools to help individuals with dementia transition away from driving with dignity."
Some people are able to continue driving in the early stages of Alzheimer's disease, but it requires ongoing evaluation to ensure safety. It may be time for your loved one to stop driving when he or she:
- Fails to observe traffic signs
- Forgets how to locate familiar places
- Makes slow or poor decisions in traffic
- Drives at an inappropriate speed
- Becomes angry or confused while driving
- Hits curbs
- Uses poor lane control
- Makes errors at intersections
- Confuses the brake and the gas pedals
- Returns from a routine drive later than usual
- Forgets the destination you are driving to during the trip
For more information on dementia and driving, click here.
Super Bowl Rental to Benefit Alzheimer's Association
Indianapolis resident Jeremy Stierwalt is one of many people renting their homes to visitors who are coming to the Circle City for Super Bowl XLVI. Jeremy is not looking to cash in for his own benefit. Instead, he plans to donate the proceeds from the rental to the Alzheimer’s Association. Jeremy’s grandmother passed away from Alzheimer’s disease a few years ago.
“It was an incredibly sad journey to watch her go through. From the days where she forgot a few names, to the days where my grandfather had to find her because she got lost walking to the post office, it was horrific,” Jeremy said. “It was a tragedy, not only because she was falling apart before our eyes, but she also took much of the life out of my grandfather.”
Jeremy remembered a painful conversation with his grandmother, not long before she died. “She once told me, when she had a moment of clarity in her last months, that she still knew what was going on but couldn't control it,” he said.
Jeremy also watched his dear friend, Nick Healey, deal with the devastating effects of Alzheimer’s. Nick’s father died after being diagnosed with early-onset Alzheimer’s disease. Jeremy said Nick now lives with the knowledge that he could very well be diagnosed with the same disease that took his father’s life at such a young age. “Not only did Nick have to deal with the degenerative cycles and death of his father, but he also runs a chance of having the disease himself,” Jeremy said. Jeremy said Nick’s positive outlook is inspiring. “He [Nick] now takes life day by day, enjoying each day and each moment more, knowing that he may not have the duration he once thought he did,” Jeremy said.
Jeremy said based on his own experience and watching what Nick has endured, he sees a great need to support the Alzheimer’s Association. “If I can do this from a financial perspective, why not? All I have to do is move out for a few days. Simple, yet effective,” Jeremy said. “I've been very fortunate throughout my life, and with the opportunity of the Super Bowl being in Indianapolis this year, a platform exists to do just that.”
The three bedroom two and a half bathroom home is located on Massachusetts Avenue, less than one mile from Lucas Oil Stadium. The $7,000 per night rental fee includes a fully stocked bar, pool table, Jacuzzi, seven flat screen televisions, two heated indoor parking spaces, and a rooftop deck with skyline views.
For more information about the rental, click here.
