The Rebound Indiana: Navigating a dementia diagnosis during the pandemic

Posted at 2:00 PM, Oct 15, 2020

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FISHERS — Indiana is home to 110,000 Hoosiers living with Alzheimer’s Disease and 342,000 unpaid Indiana caregivers, according to the Alzheimer’s Association Greater Indiana Chapter.

There are a lot of resources in Indiana ready to aid Hoosier families to not take this journey alone, even amid a pandemic.

Marsha and Terry Howell are a Fishers couple who recently celebrated their 50th wedding anniversary. In the past couple of years, they are figuring out a new chapter of their lives.

“I guess when you first get married, you don't think there will ever be these kinds of things that you have to work through together,” Marsha said. “And so you don't anticipate that you have to be such a strong partner and we have tried them all.”

Shortly after retiring five years ago, Marsha noticed something different about her husband.

“I started to recognizing the changes and the cognition,” Marsha said. “And after we retired and we were together all the time, I started seeing more and more of it. And everybody kept telling me it is the normal aging and I kept saying I don't think it is.”

With no family history, Terry was diagnosed with Lewy body dementia.

“There are times, if I were her, I would not be very happy,” Terry Howell said his wife, Marsha. “She never belittles, she never lets me know that she must be frustrated.”

While Marsha has worked to remain positive, the process is not easy.

“There have been some times that I have had just total meltdowns and it's those times that I have really needed the assistance of somebody else to talk to and just to say, you know, help me through this,” Marsha said.

The extra hand she needed came from a call to the Alzheimer’s Association Greater Indiana Chapter.

“They will help you the way no one else does,” Marsha said. “He started doing the hallucinations and things like that and it was to a point that it was just beyond anything I have ever dealt with. And so when I reached out for help, all of a sudden, I was like I am not alone. There are other people out there. And I don't have to be this alone. And he no longer felt like he had to keep it a secret.”

For Marsha, it broke down barriers she was dealing with and it opened resources to help her and Terry cope and move forward together.

The organization offers resources for Indiana families navigating the early stages of Alzheimer’s and dementia.

“Trying to figure out what, when I guess behavior is,” Terry said. “Is this my normal or is this something else that I need to pay more attention to? It is more the unknown. I keep saying, I wake up in the morning, same as always. So keep picking off a day at a time.”

For Terry, it gives him a community of people that understand what he is going through. And Marsha can connect with caregivers who are also partners.

“You can feel you need to hide it,” Marsha said. “And what we have found is that bringing the family in and making this a family deal, we are dealing with it together and we don't have to hide anything from anybody. You can make it what you want it to be. If you want to make it contentious and if you want to make it something that everybody is fearful of, or is afraid of. But it is so much better to celebrate it. Celebrate what they are becoming now and go through it as a family together.”

Social engagement is critical for people in any stage of the disease and the Alzheimer’s Association Greater Indiana Chapter quickly switched their resources over to a virtual environment to continue serving Hoosier families when COVID-19 hit.

"The earlier that we can get a diagnosis of any type of dementia, whether it be Lewy body or whatever it is,” said Stephanie Laskey, the program director at the Alzheimer’s Association Greater Indiana Chapter. “The, I can't say better, the better a prognosis, because we don't have a cure, but a better quality of life and the better that individual can be with planning that quality of life.”

Their mission is to provide and enhance care and support for all affected by the disease and to reduce the risks of dementia through the promotion of brain health. These resources are not just for the patient, but for the caregiver as well.

“For example, so many people lost the ability to go to an adult day center, and that gives that caregiver just one hour, two hours, three hours of rest bit throughout the day,” Laskey said. “They can maybe go do their grocery shopping, maybe they can get their nails done, whatever it is that they can do for themselves, they lost that so we knew we had to ramp up efforts to provide something even in a virtual environment that might not have quite the same level of impact that we would hope for in-person environment.”

Memory loss that disrupts daily life may be a symptom of Alzheimer’s or other dementia.

According to the Alzheimer’s Association, some of the main warning signs and symptoms to keep an eye out for are:

  • Memory loss that disrupts daily life
  • Challenges in planning or solving problems
  • Difficulty completing familiar tasks
  • Confusion with time or place
  • Trouble understanding visual images and spatial relationships
  • New problems with words in speaking or writing
  • Misplacing things and losing the ability to retrace steps
  • Decreased or poor judgement
  • Withdrawal from work or social activities.
  • Changes in mood and personality

The Alzheimer's Association Greater Indiana Chapter is offering a Virtual Resource Fair from 12-4 p.m. Friday. It is free to attend and it will cover resources available from the financial and legal considerations that come with a dementia diagnosis and the process for determining when it is time to stop driving.

It will feature a number of expert speakers from organizations such as the Indiana Long-term Care Ombudsman Program, the Indiana Association of Area Agencies on Aging, the Indiana Health Care Association, and the Indiana Association of Home and Hospice Care.

These special guests will provide information about the services available to Hoosiers affected by Alzheimer's and other dementia at every stage of the disease.

Registration for the Virtual Resource Fair is free and available here or by calling the Alzheimer’s Association 24/7 Helpline at 800-272-3900. A full schedule of events and login information for all of these sessions will be provided upon registration.