At a Loss: Coping with Alzheimer’s

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“Today is the best day.” That’s the motto for Barb and Bob Wood. It’s the best option when confronted with a disease that may cause you to forget the day before. 

“I’ve done so many things in my life that it’s unbelievable,” Bob said. But on a day-to-day basis, he might not remember any of those things. 

Bob has been living with Alzheimer’s disease for 6 years now.

“Everybody wants to know what I did – I did just about everything,” Bob said. “He did, he’s not exaggerating,” his wife echoed.

That list includes being a teacher, musician, and a scuba diver, receiving his master’s degree in his fifties and serving in the Air Force during the Korean War. 

“I try to think back to the times when I was doing all of that stuff and I just don’t remember anything anymore,” Bob said. “So every day I gain, I lose one on the beginning. But, I’ve had a good life.” 

Bob and Barb also team-taught at Hendy Ave. Elementary for three years, after Bob worked for 40 years in the cable industry and earned his masters in education. The couple’s experience as teachers allowed them to approach the diagnosis in a unique way. 

“When he first got diagnosed my temptation was to be devastated,” Barb said. “Then I thought, no, I’ve never been devastated by anything. I’ve always looked at something like that as a problem to be solved. And I taught problem-solving in school, and I taught it to our kids. So we started to problem solve.”

Confronting the disease head-on, the couple did their homework. They discovered the benefits of maintaining a gluten-free and low-sugar diet, socializing, and staying active. 

“I’m so glad we didn’t waste time six years ago being devastated. I’m so glad we have had the most amazing six years learning about Alzheimer’s learning about each other, learning about our environment,” Barb said.

Together, the pair has completely altered their lifestyle. They attend tai chi and Zumba classes weekly, make time for family and friends and maintain a healthy diet. (Barb shared some of her recipes here.)

Barb calls Bob the “salad king,” for the large, healthy salads he makes every day for their lunch.  They’ve even taken their Zumba lessons home, having “dance parties” in their kitchen, using their Amazon Alexa.

Dr. Corbalan said although there is no conclusive evidence that living a healthier lifestyle actually has any direct effect on Alzheimer’s, being in good health does help with dementia in general. Chronic medical problems can make the disease progress more quickly, so having those issues addressed early on can slow down the process.

“Eating well is very important, because people with Alzheimer’s one of the things that happen, they tend not to eat well, they tend to lose weight, they tend to be malnourished if no one is there to support their nutrition, or they can even forget to eat,” Dr. Corbalan said. 

Fortunately, that is not the case for Bob, who has a loving wife fully committed to his health. Barb uses alternatives to sugar in her recipes, such as bananas and cacao powder, makes smoothies with avocados, a “super food” that has been proven to boost brain health, and even tends to a sage plant in their screened-in porch – the herb is linked to improving memory and other cognitive functions.

Taking the time to learn about the disease, and how to ‘live well’ with it, seems to have paid off for Bob. His mother passed away from Alzheimer’s in her early sixties; Bob is 82 and has been living with the disease for 6 years now. 

“As of right now there’s no way to stop it completely, but you can slow it down,” Barb said of the disease.

New technology allows doctors to diagnose Alzheimer’s ten years before they actually start to show symptoms. The hope is to eventually find an effective treatment that people can begin to use as soon as the abnormal brain activity is detected. There have been some successful trials on animals. 

Dr. Corbalan said he is “confident” that a treatment for Alzheimer’s is on the horizon. “I’ve heard many people say, ‘the first person to be cured of Alzheimer’s has already been born.’”

Even if a full-blown cure isn’t quite there yet, he believes there will at least be a treatment, similar to the one for AIDS.

A recent study does offer a glimmer of hope. A study conducted by the Journal of American Medical Association (JAMA) found that intensive treatment to reduce blood control can reduce the occurrence of mild cognitive impairment, a known risk factor for Alzheimer’s and dementia. The best news, though, is that since the study’s results were not definitive on reducing the risk of dementia alone, the Alzheimer’s Association has contributed $800,000 the study’s efforts further. 

Maintaining one’s identity can be an incredibly difficult task as Alzheimer’s ruthlessly robs patients of what makes them who they are – their memories. Sexton encourages her constituents to keep themselves involved, albeit less heavily, in whatever activity they did prior to their diagnosis.

For Bob, that’s music. Once a substantial part of his everyday life, music has had a profound influence on Bob’s mental health and well-being since his diagnosis. You can tell just from a brief conversation with him that he misses playing music severely. Fortunately, he is still able to play a bit of guitar and piano with his son, Dave. Sexton said that is exactly the extent to which she would advise patients to keep themselves involved in their identity-forming hobby or passion.

“So if I used to play the drums, and maybe now I can’t remember how to play the drums, but maybe I can go listen to performances and be surrounded by music because that was such a big part of my life,” Sexton said. “It’s thinking about it in a broader context, not being so rigid in ‘I have to play the drums because that’s what I’ve always done,’ but instead, music was a big part of my life, let me explore what I can still do with music today.”

While the most obvious battle an Alzheimer’s patient has to fight is one for identity, there is another – the battle against stigma.

The stigma and misperception surrounding Alzheimer’s and dementia can deter families and individuals from seeking the care that they need, or even getting diagnosed in the first place. 

Toni Sexton from the Rochester & Finger Lakes Chapter of the Alzheimer’s Association said the most effective way for those who do not deal with the disease to help combat stigma is to keep an open mind. 

Still, for those who do have to confront the fact that either themselves or their loved ones are losing their memories, it can be difficult to accept.

“If you know the disease has no cure, no treatment, no intervention, the barrier that creates between seeking out answers – I can see where families would be very hesitant, very scared, very fearful,” Sexton said. “Luckily in our local territory, we have a wealth of support services for families to help them through the course of the disease and to live your best life with the disease.”

One of the most crucial steps a family can take is to start planning early, just as Barb and Bob began “problem-solving” as soon as Bob was diagnosed. 

“Being able to voice your decisions when you’re still in a phase where you’re cognizant and able to make decisions for yourself is not only a gift to yourself but also a gift to your family, so that down the road they don’t have to question what your choices would have been,” Sexton said.

Sexton also said it’s beneficial for Alzheimer’s patients and caregivers to seek out social connections with others who are impacted by the disease, to help them feel less isolated.

Engaging in social activities together also helps people return to their original relationship, removing the “caregiver/care-receiver” roles, whether it be a parental, spousal, or other types of relationship. 

The Alzheimer’s Association offers several programs and events to help patients stay connected to the community, including support groups, Understanding Alzheimer’s educational sessions etc.  Barb and Bob participate in several such activities. 

Sexton also stressed the importance of caregivers to commit to self-care. She said it’s not uncommon for a caregiver to pass away before their partner, because of the stress that can result from providing nonstop care. It can take a very long time for the disease to run its course, so it’s important for the caregivers to preserve their own longevity. 

“It’s a marathon, not a sprint,” Sexton said.

 But Sexton emphasizes that there are supports available for caregivers as well as patients. “No one has to go through this alone.”

The 800 helpline is available 24/7, 365 days a year, and it’s a real person on the line who has access to an abundance of resources.

“It’s about when someone offers to help you, saying yes,” Sexton said. 

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