Margaret Bromley knew her sister Marilyn’s memory was slipping, but she distinctly remembers the day she realized Marilyn had a significant memory deficit. Margaret picked her up for a doctor’s appointment, and when she asked about their destination, Marilyn couldn’t recall where they were supposed to go, or even the doctor’s name.
Margaret started attending support group meetings with Hal Forrester and Anne Balcom, Marilyn’s husband and daughter, where they learned many things about Alzheimer’s disease and other forms of dementia.
They are grateful to have been helped by Episcopal Church Home (ECH) team members throughout the frightening and grueling journey that many families face.
A long journey, helped by Episcopal Church Home
Friends mentioned Episcopal Church Home, which Margaret, as a lifelong Louisville resident, knew generations have respected for its quality of care. ECH helps families with memory care, personal care, long-term care, and short-term rehabilitation.
But at first, Margaret was concerned because her family wasn’t Episcopalian. Don’t worry, the chaplain assured her: “It doesn't matter whether you’re Christian or Jewish, or Protestant, Catholic, Muslim, non-believer. We're here to help,” Margaret recalls the chaplain saying.
Margaret, Hal, and Anne learned about things like sundowning syndrome, where people living with dementia become more frightened and argumentative as night falls.
They also were taught the importance of joining the “reality” Marilyn was experiencing to make conversations with her less difficult.
If Marilyn believed her husband Hal was a stranger, they would go with that, as experts advise, and explain he was her caregiver for the day. Other days, Marilyn would think Hal was her father, and ask where her husband was. The ECH team taught her the importance of not trying to win an argument with someone with cognitive loss. In other words, people with dementia are always right, because they’re living in a different reality.
Expertise and safety at ECH
The family also learned other lessons through the dementia support group and from ECH team members. Those things included:
- Ways caregivers need to avoid burnout, including by asking others for help; and
- That memory care residences and nursing homes can lift heavy burdens from families’ shoulders, so daughters, sons and spouses can focus on those roles again.
Hal and Marilyn later moved into a Dudley Square patio home on the ECH campus, where Hal hired a private caregiver in their independent-living home.
In her frustration with dementia, Anne began writing a journal about the family’s dementia experiences that later became a blog. Anne, years later, compiled them into a book.
[Anne Balcom’s book, “The Blue Velvet Drape: Dealing with Dementia, Her Daughter’s Journal,” can be purchased for $14 (paperback) or $4.99 (for Kindle) through ALZauthors.com or Amazon.com.]
“My parents said it was so worth it to sell their house and move here,” Anne said. Her Mom “always got the best of care, and the community just kind of wrapped their arms around my parents when they moved here.”
An impromptu wedding
One day came along when Marilyn and Hal had been married 52 years, “and she did not remember that she and Dad were married,” Anne said. So, ECH staff held an unexpected wedding ceremony for them, complete with a veil and a beautiful long white dress for her.
“Aunt Margaret actually stumbled upon this while it was happening,” Anne said. ECH team members had a gown there, and a gentleman gave Marilyn away.
“They had their first kiss, their first dance, and everything,” Anne said.
Margaret recalls: “I came in and to see her, and she said, ‘Hal and I are getting married today.’”
Margaret thought that was great, but she cheekily told Marilyn: “Well, you didn't ask me to be your maid of honor.”
Marilyn told her: “Well, you can do that.”
Margaret, who was in workout clothes because she had come from the gym, helped her sister get dressed before the ceremony. Afterward, they returned to the room, and Margaret helped her sister out of the gown. That’s when Margaret realized, “I never took off her blue jeans!” when putting on the gown, she recalled with a laugh.
In creating the speedy wedding, memory-care team members were using a technique known as ‘the 3Rs,’ in which people communicate with those living with dementia – helping the person feel they are Right, and then Reassuring them, while Redirecting the conversation to another topic.
Related: Video from Shannon Braun, director of the Episcopal Retirement Services/ECH Center for Memory Support and Inclusion: The 3 Rs – Right, Reassure, Redirect.
Also, here are printed communication strategies about 'The 3 Rs' (Right, Reassure, and Redirect).
Margaret said the wedding said a lot about Episcopal Church Home, “which I thought was wonderful.”
Anne agreed: “To me, that shows how you all go above and beyond.”
Margaret Bromley and her niece, Anne Balcom, appreciate the information they received about memory care at Episcopal Church Home, and the care Margaret's sister, and brother-in-law, and Anne's parents, received at ECH.
A sister’s thanks, and the comfort of home
Marilyn passed away the summer of 2012, and Hal died in 2017.
Hal also received care at the ECH nursing home. When people learned he had just days left, “he had people lining up to come and see them from here – staff and neighborhood friends,” Anne said. “It was a difficult time, but the love and compassion from everybody was comforting.”
Margaret became close friends with a woman who participated in the support group with her, Hal, and Anne. In fact, they play golf every Friday, with two other people.
The woman, who is Catholic, takes Communion twice a month to Catholics at Episcopal Church Home. She told Margaret, “I always do this, because Episcopal Church Home helped us so much.”
Margaret is thankful, too. That’s one reason she moved into a Dudley Square patio home, where residents receive preference for memory care and other care at ECH.
“I love the fact that I live independently. It's my own place. I have a wonderful patio,” Margaret said. “I've made some special friends, and enjoy them, and we like the club house.”
Some also visit the historical society together. And Margaret started a watercolor group, of which she’s now the facilitator. There also are exercise classes, and cocktail hours every Wednesday, with optional dinners afterward.
Counting on Dudley Square neighbors, and on ECH
Margaret finds comfort knowing all her Dudley Square neighbors are very helpful: “I could call anyone in the community, and they would make sure that I would get the help I needed,” she said.
Margaret isn’t especially worried about getting dementia herself, “but I have talked to my children and Anne, and I've said, ‘If you see me slipping, let me know. Let me check this out,’” she said.
If that should happen, she’s quite confident in the care she’ll receive at the Episcopal Church Home, a continuing care retirement community (CCRC) that provides increased levels of care through an older adult's life as their health needs change.
Related: Dudley Square III patio homes are sold out, completing the ECH Master Plan
“I moved here because I don't want my children to feel like, ‘Oh, what are we going to do about Mother?’ I moved here because the care is continuing, and if I need more help, it's there,” Margaret said.
“Another thing that I think is wonderful about Episcopal Church Home is once you're in here, it’s a non-profit organization, and even if your money should run out, they have the Promise Fund that will be there for you, if you need it,” Margaret said. “I think that's a comfort for most people that when they come here, that that's offered.”
Related: Suggestions for how dementia care partners can get support
“A lot of people I know are going through memory care situations now, with their parents,” Anne said. “And I'm always recommending this facility to anybody who asks.”
“It's been a tremendous help to my family, and I could never be more grateful for the staff here,” Anne added.
“That's why I'm here,” Margaret said. “Our family feels very comfortable with the Episcopal Church Home.”
At Episcopal Church Home, we offer five lifestyles and levels of care, including independent living, personal care, memory care, long-term care, and short-term rehab. Because memory support is caregiver-intensive and involves specialty-trained staff, the cost of care may be surprising. In the greater Louisville area, studio accommodation in memory support and personal care generally ranges from about $7,200 to around $9,200 monthly.
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