Alzheimer’s Doesn’t Care – Thoughts of a 21-year-old Caregiver

Alzheimer’s is a selfish disease. It doesn’t ask if you’re ready. It doesn’t care if you have other plans. It takes and takes and takes. And, just when you think you’ve given all you have to give, it takes some more.

Alzheimer’s thrust itself into Mollie McCune’s life when she was only 17. Mollie had just finished her junior year at Golden High School and adjusting to the fact that her parents were going through a divorce. Little did she know that in addition to her parents’ marriage falling apart, her mom, Julie, was crumbling as well. At age 52, Julie was diagnosed with Alzheimer’s.

Within three years, the effects of the disease were telling on the whole family. Sister Katie, who’s seven years older than Mollie, was managing the family’s finances remotely from Boston. Mollie provided hands-on care, but it was soon evident that professional help was needed.

“Mom stopped driving about three years ago when we noticed some dangerous tendencies, such as not understanding certain traffic signals, or not staying in the correct lane when turning,” said Mollie. “We had to pay a lot for caregivers. She began having issues…forgetting to eat, how to use the medication dispenser, how to use the microwave…”

When the challenges of providing care became too daunting, the sisters with their father’s support sought outside help, which included the Alzheimer’s Association of Colorado. That connection led to a wealth of resources, from home care companies to support groups to the current focus of Mollie’s struggle with the disease: the Walk to End Alzheimer’s, which is the Association’s primary tool to raise funds for a cure.

“It’s so hard when you first get the diagnosis – when you learn what the future holds – that’s the time when you need support,” said Mollie. “That’s what the Walk’s all about. That’s a time when you’ve got your whole support network all in one place at one time.”

Three years ago, Mollie formed a team at the Denver Walk, “Julie Strong.” The first year it was just Mollie and her mom, but the team continues to grow, reaching 27 people in the third year.

Sadly, Mollie isn’t confident that Julie will be able to participate in the 2017 Walk, as the pace of the disease seems to be quickening.

Time for a change

21-year-old-caregiver-photo
Mollie McCune (right) with her mother, Julie, and sister, Katie.

At the end of 2015, right after enjoying a final Christmas holiday together under the same roof, Mollie and Katie moved their mom into an assisted living facility in Denver where she could get the around-the-clock care she needs as Mollie furthers her education at University of Colorado.

“It was a stressful blessing,” Mollie said of the move, but the time had come.

Alzheimer’s has even left its imprint on Mollie’s studies. She’s majoring in medical sociology, looking at how diseases like Alzheimer’s affect society.

Already, 67,000 Coloradoans are living with an Alzheimer’s diagnosis. By 2025, that will rise 37 percent to more than 92,000. The disease takes a heavier toll on women, African-Americans and Hispanics.

“As Alzheimer’s continues to expand, it has a big impact on so many people,” she said.

Despite the pain that Alzheimer’s has caused her family and regardless of the years it is stealing from her mother’s life, Mollie knows that others feel the loss as well. She acknowledges how hard the process has been on sister Katie, who had to manage from afar, and was shocked by her mother’s deterioration when she would travel back for visits.

“The holidays are hard,” Mollie said. “We’d get questions from people who hadn’t seen mom in a few months” who were taken aback by the changes.

And even though she’s with her mom regularly, Mollie still misses her.

“As she declines, it gets harder,” she said. “I miss spending time with my mom, even when she’s there. She has difficulty speaking, and she loved to talk. It’s a long-term grieving process. The person is still there, but they’re not who they used to be.”

The family continues to adjust

The McCune family continues to adapt to the cruel taskmaster that Alzheimer’s is. And each tries to make the best of a worsening situation. Julie, who was very active in her church before her diagnosis, still goes every Thursday to help feed the homeless. And she wrestles with the urge to get outside, since most of the persons with Alzheimer’s in her living facility tend to be in their 80s while she’s a relatively youthful 57.

Sister Katie, who recently moved back to Colorado, is happy to be back in closer proximity to her family, and Mollie looks for the positives, finding them where many others may see none.

“This (Alzheimer’s) has made me compassionate to other people’s struggles,” said Mollie. “It caused me to grow up quickly, and it made me understand that everybody is dealing with something. You never know what’s going on in another family. It’s also made me passionate about furthering research and finding treatments (for Alzheimer’s).”

Mollie also learned an important lesson about self-reliance:
it’s okay to ask for help.

“Don’t be afraid to reach out to others,” she said. “You think that no one will understand. The most important thing is admitting you’re overwhelmed. Whether it’s calling the Alzheimer’s Helpline (800-272-3900) or asking a family member to come for the day to take some of the burden off you.”

And, even in the darkest times, Mollie still draws inspiration from her mother.

“Mom has really given me something special,” Mollie said. “Even when she’s struggling, she’ll say ‘it will be okay because I’m strong.’”

7 thoughts on “Alzheimer’s Doesn’t Care – Thoughts of a 21-year-old Caregiver

  1. Julie IS strong. She is and always has been an amazing person. It’s obvious she passed that on to her daughters. Katie and Mollie, I think of both of you often as I remember my friend, Julie. Thank you for sharing your story.

  2. Thank you for sharing your story. It was nice to see that other young adults are being affected by this destructive disease. Being a daughter and care-giver myself of an Alzheimer’s diagnosed mom, I understand the daily struggles and long-term grieving process. I think your whole family is strong. Keep moving forward in changing the future of Alzheimer’s.

    • The hardest part about experiencing this at a young age is feeling like other people your age don’t understand it. I’m sorry you know what this struggle is like and that you’ve had to deal with the long-term grieving. It’s something I wouldn’t wish on anyone. Thank you for your support! Stay strong

  3. Mollie,
    I am so impressed with your courage and wisdom. Your story may help many families going through similar journeys. Thank you for sharing. Your Mom is so blessed to have you and Katie. You are both remarkable young women! Stay Julie Strong!

  4. Hi Mollie,
    I just read your story through Facebook, since I follow ALZ awareness still, hoping one day to be more active. I lost my mom to EOALZ in 2015. She was only 60, and I began taking care of her, solely, in my late 20’s. I had already begun my own family and the juggling act was certainly very tricky. I kept her in my home as long as I could. We even purchased a different house to get her a mother in law suite. But we did much of it on her disability and then out of our own pockets. My husband and I were both teachers at the time, and not making a ton.
    Anyway, I know the stress of pioneering through this God-awful disease. I’ve heard it described as the worst possible, most stressful job on earth to be a caregiver for EOALZ. Some days, this was absolutely true. Anyway, I know I’m a stranger and all, but if you need to talk to someone who’s been there, feel free to email me anytime tcomandari@google.com. I can even give you my number. Maybe the reason it seems there are so few of us out there, is because we rapidly jump back into our own lives in our 20’s and 30’s. Anyway, you’re not alone – we’re out here.

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