I was the primary Alzheimer's caregiver for my dear friend Mitzi. This is her & my family's story.

 
Ansley Ward,
March 17, 2020 | in Community Stories, Caregiver's Corner, Mood Management, New Diagnosis of Alzheimer's

 
Editorial Review Phoebe Stoye, A.B. in Neurobiology, Harvard College
Caretalk

Ansley Ward, 39, is no stranger to Alzheimer's and its devastating effects. She helped care for her great-grandmother in middle school, and worked for a medical care facility in high school. In 2005, Ansley's grandmother was diagnosed with Alzheimer's, which led to Ansley, her husband, and her two kids moving to Jacksonville to care for her. Despite these hurdles, Ansley went on to major in theater in college, and she later helped create multimedia material for her church.

That is, until Mitzi–who was diagnosed with Alzheimer's in February of 2018–became her new focus, which led to Ansley becoming a full-time caregiver. With the power of faith and love, she was willing to give up her job for a higher calling.

"The church could find somebody else to take my place, serving all those hundreds and hundreds of people. But in Mitzi's world, because of the way Alzheimer's works, I wasn't replaceable."

After Mitzi passed away after three years of caregiving, Ansley finds herself relearning how to reenter the world again. But from this tragedy came a silver lining. Not only does she consider Mitzi's family her own, Ansley also has worked tirelessly to tell her story to spread awareness about Alzheimer's Disease. Here is Ansley's story.

A couple at Alzheimers walk

Tell us about your experience receiving the diagnosis of Alzheimer's for you or your loved one. What have you learned or wish you knew?

Mitzi's sister was a very good friend of mine, and I knew Mitzi before she was diagnosed. In the summer of 2016, when they had to voluntarily surrender her driving privileges, her sister was really concerned about what this would do to Mitzi because she was very social and she was terrified that she would be stuck at home. So I offered to just come around once a week and take Mitzi out for things to do, like Bible studies. We'd go to my church and then to lunch. I could take her to see her friends. That morphed into spending somewhere between 40 and over 60 hours together a week. I started to see Mitzi as family. I mean, my sons became like her grandchildren.

What was it like adapting to your or your loved one's condition?

This was something that I knew from very early on–that she had a truly unique story. Early-onset Alzheimer's is not something that a lot of people are familiar with. I really have a heart to teach people about a positive approach to care method that people use, which is exactly what I was doing with Mitzi.

I ended up becoming her social, well, everything. I would let people know how she was doing–the ones who couldn't handle coming by. We would arrange for the other ones to meet us. By the spring of last year, she couldn't even formulate a sentence, but she could sit there and she could smile and she could understand some things. She still loved being around people. That was her medicine.

Woman on Lifegaurd chair

How would you like to remember your loved one?

Mitzi wanted in some way, shape, or form to be able to help people. She really wanted to be able to help people use her situation, to help people with this disease. She wanted to leave her brain to science. I suggested to Mitzi that we use her life to try to help people, instead of her death. She was all for that, and I got permission to help share her story so she still had a voice.

Ultimately, that was the most unique part of our pairing–my gifts in communication and her gift in wanting to share her story, to help people. She wanted people to see that Alzheimer's doesn't have to be totally isolating. She always said people stopped coming around, like they're scared of you, but it's not contagious.

Family feeding giraffe Alzheimer's caregiver and patient

As her caregiver, I got Mitzi's permission to share her journey with Alzheimer's Disease so that she would still have a voice, even after she was gone.

I have thousands of pictures and videos from our time together. I did that on purpose because I was capturing the memories. There were so many things that we did that I wanted to share with the rest of the world to be able to try to normalize this disease.

My son asked me the other day–he was very close to Mitzi, very, very close. He took her death really hard. He asked me the other day, "Do you think Mitzi is finished with her tutorial of angel training in heaven yet?" And I said, "Yeah, I think she's been up there long enough that she's through with her tutorial." And he said, "So do you think she's watching everybody and seeing who she can save?"

That was a really precious memory for me, knowing that's the legacy she left with my family and my kids–that at nine-years-old, he gets Alzheimer's and can't take that away.

Three members of family: Alzheimer's caregivers

(Editor's note: If you want advice on how to explain Alzheimer's to your children, check out this article on Caretalk).


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