Mary Jones’ life was turned upside down when her husband, Bill, was diagnosed with young onset Alzheimer’s disease.
They started to notice symptoms when he was in his late 50s. Now 65, Bill can’t walk, can’t feed himself and is in a hospice care center in White Marsh.
Mary Jones, of Havre de Grace, was his caregiver until she couldn’t do it anymore, she said.
To bring awareness to young onset Alzheimer’s and Alzheimer’s in general, Jones and numerous family and friends — team name “Keeping up with the Joneses” — are walking in the Alzheimer’s Association Harford/Cecil Walk to End Alzheimer’s Saturday from 9 a.m. to noon at Leidos Field at Ripken Stadium in Aberdeen.
More than 1,100 Harford and Cecil County residents and businesses have registered for the walk, the goal of which is to raise $140,000.
“In addition to raising funds for medical research and support services, the visibility of the walk lets people know that the Alzheimer’s Association is here to provide assistance when Alzheimer’s touches your life,” Greater Maryland Chapter Executive Director Cass Naugle said.
There are 5.8 million Americans who are living with Alzheimer’s disease, including about 110,000 of them in Maryland.
For Bill Jones, his initial signs were subtle, trouble with visual and spatial relationships, the inability to multi-task and a general slowdown.
“Everything he did was slower — walking, talking, eating,” Mary Jones said.
At work as a warehouse manager, he had difficulty with routine tasks, she said. It wasn’t until he lost his job that the diagnoses came more quickly.
Initially it was MCI, mild cognitive impairment.
“A lot of people get that initially, even though I knew it was more than that," Mary said. “I knew things just weren’t right.”
Bill saw neurologists, memory care specialists, neuro-psychologists and his primary care physician.
In early 2017, Bill was diagnosed with young onset Alzheimer’s. In 2018, Mary retired at 61 to care for him because he couldn’t be home by himself.
The same year, Bill was diagnosed with Lewy Body dementia, a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time, according to the Alzheimer’s Association.
Mary couldn’t take care of their home and Bill so they moved into a condo in Havre de Grace. Shortly after that, Bill was admitted to an assisted living facility in White Marsh.
In January, Bill went missing from the facility for 18 hours, his wife said. Since then, he’s lost weight and he’s on hospice care.
“He’s still alive, but he can’t walk, he can’t feed himself,” she said. “It’s taken our lives and just turned them upside down.”
The Alzheimer’s Association has done so much for the Joneses, she said. Mary and Bill were advocates early on and participated in support groups.
They went to Washington, D.C., to lobby for the Young Onset Alzheimer’s Act, which gives younger people with Alzheimer’s access to service and benefits through the Older Americans Act.
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“Now he can’t because he’s not old enough,” Mary said. “We need that passed to help those of us and our loved ones who have early onset [Alzheimer’s].”
The association also funds research.
Mary, who was a long-term care ombudsman, advocating for people who lived in nursing homes and assisted living facilities in Baltimore County, used to tell people that she couldn’t imagine what they were going through.
“Now that I’ve had the experience, I can say that is an understatement,” she said.
The Alzheimer’s Association’s Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Participants will learn more about Alzheimer’s disease, advocacy opportunities, clinical studies enrollment and support programs and services.
Walk participants also honor those affected by Alzheimer’s disease with the Promise Garden ceremony. People who are affected by the disease will take part in the ceremony. From the stage, attendees will hold different colored pinwheel flowers to distinguish how the disease has impacted their lives: blue, living with the disease; yellow, caregiver or care partner; orange, a supporter in the fight to end Alzheimer’s; purple, lost a loved one to the disease; and white symbolizes the hope and effort to find a first survivor.
The walk is sponsored by Edward Jones. To donate to the Walk, visit alz.org/maryland/walk or call 800-272-3900.