Meeting Marianne and Roy Scott, you notice one thing right away – they are still as much in love as the day they met in seventh grade homeroom over 60 years ago.
Together for 60 years and celebrating their 50th wedding anniversary next year, the Mechanicville couple has spent almost their entire lives together, which makes the devastating diagnosis of Alzheimer’s disease all the more painful.
“She was having difficulty reading and making out simple words,” Roy says. “When she needed to practice reading a simple picture book before reading to our granddaughter’s kindergarten class, we became very concerned.”
Marianne was a teacher for 36 years and a very active member of the community. An avid reader, gardener and involved grandmother, she knew something was very wrong.
“I would try to read a book and have to start over the next day,” she says. “I also started seeing double and that was very troubling.”
After being referred to a neuro-ophthalmologist, undergoing a PET scan and a battery of other tests, the doctor confirmed the diagnosis. Unexplained vision loss, particularly when it arises with symptoms such as difficulty reading and writing, can be a sign of an unusual type of dementia called visual variant of Alzheimer’s disease.
“She was diagnosed in the Spring of 2011. We were devastated,” Roy says. “We called our kids and grandkids together and had a family meeting. It was one of the hardest days we have ever had.”
With strong family support and a network of good doctors, the couple tried to work past the mourning phase and move on with their lives.
“It has been a total role reversal for us,” Roy says. “She always worked full time as a teacher in addition to grocery shopping, laundry, cooking and coordinating our social calendar. I needed to learn how to help her do these things.”
“We do a lot of things together,” says Marianne with a smile. “He still can’t do laundry. But we do it together. He helps me cook which is one of my favorite things to do. I lost my sense of smell a few years ago, which we also found out can be an early symptom of Alzheimer’s disease. And I can’t always remember what ingredients to use, so we do it together.”
The day to day challenges can take a toll.
“Some days getting dressed is really hard. I can’t drive anymore which makes me really sad. I miss picking my grandaughter Lilli up at school, but he takes me where I need to go.”
“For someone who had such an active life, it is difficult to slow down,” Roy says about his wife. “Sometimes I try to do too much for her and she gets annoyed at me.”
“That’s because you spoil me,” she says.
More than 5 million Americans are living with the disease. Alzheimer’s disease is the 6th leading cause of death in the United States and almost two-thirds of Americans with Alzheimer’s are women. The key is understanding when you might need to see a doctor.
“We are glad she was diagnosed when she was because now we can work with her doctors to get the right medications, and do the right things physically. We are eating well, exercising together every day and trying to enjoy our time together,” Roy says.
“Telling our family and friends was very helpful. Caregivers need others to help them and we couldn’t do everything we do without their help and support.”
The couple also found an Alzheimer’s Support Group in Florida where they spend the winter months. Marianne misses her friends.
“It is helpful to talk to other people who are going through the same emotions and problems. It helps me feel like I am not alone,” she says.
“We really connected with these families and are planning to join a group here at home over the summer. Our kids have really pushed us to open up about our life and to be honest with others. When people know they understand. It makes it easier for everyone,” he says.
The key to managing the disease and its emotional toll are the same for both of them.
“You have to stay active and get involved. We look for things to do at The Senior Center of Saratoga or outings with friends and family. We are planning a River Cruise to Europe this spring,” Roy says. “Staying engaged, maintaining our friendships, fun social life and travel are critical to our survival. We let our friends know that we need their help – whether it is spending time with Marianne, taking her out to lunch or just listening. Being available is a great gift our friends have given us.”
Marianne says spending time with her family and friends makes her happy.
“I have wonderful friends I have known for 50 years and new friends who I cherish,” smiles Marianne. “They keep me going. I have three beautiful grandkids who are the center of my life.”
Even though she can no longer read, her son bought her “the best gift ever – a Kindle!” Marianne can listen to books and enjoy the stories she has missed. Looking ahead, the couple has their 50th Wedding Anniversary next year and are planning to celebrate with friends and family.
“First and foremost, we need to keep our positive attitude,” Roy says.
“We know each other very well and are totally in love. We would do anything for each other,” Marianne says.
“If someone was looking at a loved one suffering from this disease I would say to do all the things you can while you can still do them,” Roy says. “Younger people should think about long term care insurance to help pay for their care as they age. Life goes on and we try not to look too far down the road. This disease takes so much from people.”
“I am just glad to still be here and know where I where I am and love my family,” Marianne says.
“Every day we can get up together and spend the day together is a good day,” says Roy. “A good day.”
For more information about Alzheimer’s symptoms and resources, see www.alz.org.