John and Mary Osborne with their daughter Bernice in their dining room after breakfast. Bernice and other Osborne siblings have rallied together to support their parents cope with their mother’s battle against Alzheimer’s disease. (Jeremy C. Fox photo)
Mary Osborne, 72, was always an active person, a busy mother of four who worked for more than 30 years as a dietary assistant at Children’s Hospital. In her spare time, her daughter Bernice recalls, she enjoyed taking long walks through their Dorchester neighborhood.
One day, she went for a walk and didn’t return. Her family scoured the neighborhood, finally finding her just blocks from her home on Ashmont Street. She said she had gotten lost and couldn’t find her way back.
Then it happened again, in the pouring rain. A grandson found her on Morrissey Boulevard, standing in the traffic island, lost. Eventually her doctor would diagnose Mary Osborne with Alzheimer’s disease, the most common form of dementia. Alzheimer’s is a progressive and incurable brain disease that causes memory loss, impairs intellectual ability, and can cause changes in personality and behavior.
Seven years later, Bernice, 39, and her sister Brenda, 45, now work only part-time and have arranged their schedules so one of them is always home at the triple-decker they share with Mary and their father, John, 78, who has a chronic lung disease. One night a week, brothers Leroy and Leslie stay with their parents to give the sisters an evening off.
The Osbornes have joined the growing number of people providing home care for a loved one with Alzheimer’s. According to the Alzheimer’s Association, more than 5 million Americans have been diagnosed with the disease, and about 70 percent are cared for in their homes by a family member, usually a spouse or an adult son or daughter.
Keeping an ailing family member at home is demanding under any circumstances, but holiday celebrations bring special challenges beyond the day-to-day responsibilities of a family caregiver. Breaks in routine and unfamiliar environments can be disorienting for people with Alzheimer’s, and family members who see an older relative only once or twice a year may not realize how the disease has progressed.
For the Osborne family, a typical holiday dinner can include as many as 35 people from four generations, with plenty of food and conversation. Such a gathering can be difficult for Mary, who gets agitated in crowds, and frustrating for her grandchildren, who want to interact with her the way they once did and no longer can.
Lindsay Brennan, a licensed social worker and manager of the 24-hour helpline run by the Massachusetts/New Hampshire chapter of the Alzheimer’s Association, said it’s important for families to adjust expectations and be flexible.
“If grandma is the person who’s experiencing the disease,” Brennan said, “and she always hosted the Christmas Eve party, maybe one of her grandchildren can host the party but someone can go over and help her make her famous pies the day before. So she still feels like she has a role there and she’s still contributing.”
It can help to have smaller gatherings, or to have a smaller room where the family member with Alzheimer’s can visit with one or two family members at a time, and to plan events earlier in the day, when people with dementia tend to be most alert. Since older memories tend to remain with an Alzheimer’s patient longer, it’s better to reminisce about old times than to ask about recent events.
“To be able to ask Mom or Grandma or Dad or Uncle Joe to tell them about their Christmases in the ‘40s and the ‘50s,” said Brennan, “is a great way to involve them in conversation, rather than talking about current events or current family celebrations, which may be harder for the person with the dementia to participate in.”
Brennan believes that Alzheimer’s can bring benefits as well as challenges. “This disease really gives families an opportunity to take a step back and reflect about what’s really important,” she said.
Local entrepreneur Megan Shea said caregivers should speak to visiting relatives in advance so they’re prepared for the changes they’ll see. “It’s really hard for family members who are out of the area to understand the stage at which their loved ones are until they actually see it for themselves,” she said.
Shea is the founder of the Brookline-based website RetireLife, which provides resources on aging issues in Massachusetts. She was inspired to create the site by her experiences helping her mother care for her grandfather, who suffered from Lewy body dementia, the second most common form of dementia after Alzheimer’s.
Shea has seen that something as simple as a gentle touch can be very meaningful to her grandfather. “It helps him to feel very connected to everyone in the room,” she said, “even if he’s not following along with the conversation or anything like that. Let them know it’s OK to go and sit by them and put your hand on their shoulder … even a gesture as small as that means the world to them.”
David Horgan, co-author of the recent book, “When Your Parent Moves In,” helped look after his uncle through his years with Alzheimer’s. The experience taught him that small substitutions can also make a big difference, especially when dealing with forbidden food or drink.
“What we did with my uncle,” he recalled, “because we didn’t want him drinking alcohol, is we’d serve him Coca-Cola in a wine glass. And it was nice because he was partaking in the social aspect of the holidays, but he didn’t have to consume alcohol.”
Horgan, who lives in Ludlow, Mass., said it’s often painful for family members to see a loved one changing as the disease progresses, but he believes a family’s acceptance and unconditional love can make the transition less difficult. “We have to accept that our parents, that our relatives are aging, and these kinds of things are going to happen, and adjust,” Horgan said. “And know that things aren’t going to be the same, but they can still be pretty nice.”
Bernice Osborne said one of the hardest things for her family was talking to others about their mother’s illness and asking for help when they needed it. “We kind of kept it to ourselves and thought we could deal with it as a family,” she recalled, “but it’s beyond stressful and challenging, so we realized she needed to go to a day program.” For the past five years, Mary Osborne has been going to adult day care at Kit Clark Senior Services in Dorchester three or four days each week.
For the holidays, Bernice says she’s learned the importance of asking other family members to lend a hand. “You can’t be afraid to just ask people to help because you’d be surprised at, when you do ask for help, who steps up and says, ‘I’m willing to do this.’”
This year, for the first time, her brother Leslie hosted Thanksgiving dinner. “[But] I don’t know what we’re going to do for Christmas,” Bernice said, “because I can’t cook for 35 people this year; I just can’t do it. So we may just scale it down … and say that we’re not cooking.”
For families dealing with Alzheimer’s, the Alzheimer’s Association offers a wide variety of resources and services, including support groups around the state for caregivers and also for those in the early stages of the disease and their care partners to prepare for the changes ahead. Resources are also available through your local council on aging and through the RetireLife Web site.
Alzheimer’s Association 24/7 Helpline: 800-272-3900 or visit www.alz.org/manh.
Boston Area Agency on Aging: http://www.cityofboston.gov/elderly/agency.asp.
Kit Clark Senior Services: 617-825-5000 or visit www.kitclark.org.
Massachusetts Councils on Aging: www.mcoaonline.com.
Retire Life website: www.retirelife.net.
When Your Parent Moves In website: www.whenyourparentmovesin.com.