"I'm still the spouse, not the caregiver"
Those words sum up what LifeLinks has helped Mary Ann McCready craft: a world in which she and her husband Roy are able to continue to enjoy the life they’ve built, in spite of Roy’s health challenges. A world that, as she puts it, lets them “maintain the highest quality of life we can enjoy individually and together.”
Life Before LifeLinks
Roy and Mary Ann first met when she graduated from Vanderbilt and made Nashville her permanent home. They worked together for 14 years and became good friends. On their first date, they decided to get married and have now been a couple for 25 years. When Roy was diagnosed with Alzheimer’s, Mary Ann wanted solutions. “I needed to know how I could make what was happening with Roy work with our lives,” she explains. “I had no idea what to do or how to get there. I didn’t know what the disease is about and what to expect, what the next steps were, how to get in front of it, or how to help.”
How the healthcare system is set up today made finding these answers very difficult and frustrating. Continuous online research, and long calls with “professionals” left Mary Ann discouraged and unsure where to look.
What LifeLinks Did
Based on a friend’s recommendation, Mary Ann contacted LifeLinks and was surprised to learn how much support was available. A care manager sat down with Mary Ann and just listened. The care manager took in the frustration Mary Ann was experiencing and learned about Roy’s specific situation. Then she said these life-changing words to Mary Ann: "Here’s what you can do. We’re not going to try to do this all at once, but here’s what you can do right now to get in front of it."
The care manager meets with Mary Ann every week or two to assess what’s working, what can be improved, and makes recommendations based on Roy’s specific situation. As needs change, so does the care he receives from LifeLinks. Some fixes are simple and obvious; for example, the care manager suggested that Mary Ann's and Roy’s house be assessed for risks such as falls. As a result, their home needed nightlights and LifeLinks coordinated the installation. Other fixes aren’t always so simple, like finding the right caregivers. It’s crucial to match the personalities to Roy’s, and LifeLinks helped Mary Ann find people who are an excellent fit for him, his personality and his lifestyle. As Mary Ann says, “They aren’t caregivers. They’re adult activities coordinators (AACs).” That means they ensure Roy still keeps his normal routine of getting up, eating breakfast and watching the news. Then he and his AAC are off to participate in various activities, such as tennis or delivering for Meals on Wheels. “Roy paints and is working toward doing an art show that will benefit Abe’s Gardens for Alzheimer’s,” Mary Ann says. “He loves to paint. He’s getting better and better. It’s really remarkable."
There’s ongoing follow up and monitoring. A LifeLinks care manager comes to their home once a week, spends time with the caregiver on duty and talks to Roy. Mary Ann receives an end-of-the-day report from each caregiver and a weekly written report, and continues to meet with the care manager regularly. “She starts every meeting with, ‘Okay, what could be better? What’s working; what isn’t working?’” Mary Ann says. “Then we spend the rest of the time talking about solutions and opportunities.
Life With LifeLinks
“My guess is that the majority of the people who could benefit from Life-Links do not understand the rich mix of resources out there,” Mary Ann continues. “When you say ‘geriatric care management,’ you think, ‘Oh, that’s just moving people around in wheelchairs.’ It doesn’t send the message that you can be an active man who plays tennis, volunteers, swims, and goes to Cambodia and Belize…it doesn’t send the message that there can still be a happy family life going on. I don’t know that there’s anyone else in this community who provides that depth of services — it’s the traditional coupled with the unexpected. It’s the best of all possible worlds. They provide a reservoir of resources more than anyone else. And they ensure absolute confidentiality.” LifeLinks has always been solution driven. Somebody described Alzheimer’s as a bad dream you never wake up from. It’s a confusing road, but thanks to the support structure LifeLinks has helped us assemble, I’m still the spouse, not the handler. I get to enjoy my job and go home at the end of the day and watch TV with my husband, go to a party, a concert, or a movie, or share a glass of wine. And we still have lots of fun together.”
LifeLinks focuses on giving families back their independence and instilling a level of confidence that we can find answers.