Shuffling down the aisle

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Mary Gustafson, McKnight's Staff Writer
Mary Gustafson, McKnight's Staff Writer
For anyone who's in the trenches caring for someone with Alzheimer's — either in your own home or a long-term care community — the announcement of government initiatives aimed at finding a cure might not excite you too much. The Obama administration's big push to find a solid treatment or preventive regimen has a deadline of 2025, after all. It's a long wait by anyone's measure. And news of failed drug trials also isn't exactly encouraging.

In the meantime, it can be helpful to remember events that had a much deeper impact on your life because they were shared with a loved one with Alzheimer's.

For me, one of those events was a wedding I attended about 15 years ago in a nursing home memory care unit. My mom's cousin Ned married his wife, Sandy, in easily the most memorable ceremony I've ever attended.

Ned and Sandy had a much bigger, traditional wedding in Fulton, MO, which Ned's mother, Marilyn, could not attend because of her advanced battle with Alzheimer's. She was diagnosed with it when she was 65 and lived another 11 years.

I recently asked Ned how the staff at his mother's nursing home reacted when he pitched them the idea of recreating his nuptials there so that his mom and other local family members could attend. He recalls that both residents and staff were ecstatic, and that his father, my mom's uncle Chuck, also was excited that his wife would be able to attend the wedding. Fulton was a six-hour drive from her nursing home in Mount Morris, IL.

“It created a unique event they could all attend,” Ned explained. “Whether by cane or wheelchair or shuffling in on their own power, I know it gave them something else to do for a while that is rarely on the agenda. And sure enough, it was an overflow crowd.”

Ned isn't certain whether his mother had a full awareness of just what was happening that day.

“It is hard to say where my mother's memory was at that point. I think somewhere inside she recognized me, but she could not say my name, just a hug and a kiss. I believe she knew she was at a wedding and it was her son getting married. She recognized my dad the most, because he would visit her everyday.”

As for the bride, Sandy well remembers it. The ceremony was held in the unit's activity room and the “aisle” she walked down was painted with markings for hopscotch and shuffleboard. She said the activities staff had offered to move a rabbit cage out of the room for the ceremony, but Sandy insisted that the rabbit should stay.

“I remember Marilyn clapping and smiling when they announced us as husband and wife and that made it all worthwhile. I also recall that on the riverboat [where the reception was held] she walked around snatching food off of some of the guests' plates. She was quite sneaky!”

Ned remembers that the staff helped his mom get her hair and makeup done, and dressed her in a nice suit.

“She had a good time, mingled and laughed and cut the cake with us. For that one day there was no sad thoughts about her illness,” Ned added. “When we tell people we had two weddings and three wedding receptions, they all think the nursing home wedding was the coolest idea of all.”

Sandy agreed.

“It made me realize that what makes a wedding special is not the location, or the decorations, or the amount of money you spend, but rather the family and friends who attend, to share the moment and the memories you create,” she reflected. “This one we did for Ned's parents. And I think it gave Chuck some peace, knowing Marilyn could participate.”

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McKnight's Daily Editor's Notes features commentary on the latest in long-term care news. Entries are written by Editorial Director John O'Connor on Monday and Friday; Staff Writer Tim Mullaney on Tuesday, Editor James M. Berklan on Wednesday and Senior Editor Elizabeth Newman on Thursday.

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