On the northern Virginia farm where Helen Downs spent her childhood, Christmas meant a freshly butchered hog and an epic family meal. When she had her own children, Helen brought this spirit of abundance to their home.
"When I think about Christmas growing up," her son Terry says, "I remember my mom cooking in the kitchen for hours." There was turkey and glazed ham, two kinds of stuffing, buttery yeast rolls flecked with cinnamon and pies: chocolate, lemon and cherry. She made it all, and she made sure everybody got a present. For the Downs family, Helen was the heart of Christmas.
Then Helen was diagnosed with Alzheimer's disease and moved in with her son. As she slowly forgot how to make her famous yeast rolls and use her microwave, her daughter-in-law Mary helped her send out greeting cards, buy presents and bake loaves of banana bread for everyone at Helen's day care center. She took on the Christmas dinner, too.
Caring for Helen as her mind deteriorates has never been easy for Terry and Mary, but the holidays make things harder. They have to strategize about how to celebrate without disrupting Helen's routine. They struggle with how to prepare relatives for Helen's inevitably worse condition and brace for the anger and disappointment they've come to expect when fewer friends turn up every Christmas.
Some 5 million Americans have Alzheimer's, and more than 13 million family members care for them. "There are families in every town, in every state across the country that are dealing with the realities of Alzheimer's disease at this holiday season," says Ruth Drew, who runs the national phone helpline for the Alzheimer's Association.
Caregiving is plenty trying without the emotional freight holidays carry, Drew says, and the expectations surrounding a family celebration can make the season feel overwhelming. At this time of year, calls to the helpline become more urgent. "If you're calling a helpline on Christmas Eve, you're calling because you really need help."
Things have changed in the seven years since Helen moved in with Terry, 54, and Mary, 53. She's still charming at age 86, with her Southern warmth and cap of silver curls, but her condition is taking its toll on everyone. "We're tired," Terry says. "We're just trying to get through Christmas now." As Helen has declined, the Downses have had to accept a new reality.
"We can't make everybody's Christmas anymore," Mary says. "To try to pretend that the losses aren't happening doesn't do anybody any good. It doesn't help your family members understand what's happening."
Being open with family is important, says Drew. As ever more Americans are diagnosed with the disease — the association estimates some 14 million cases by 2050 — understanding how to navigate difficult holiday situations will only become more important.
Emailing or calling relatives ahead of time to brief them on what to expect and how best to support the person with Alzheimer's can help, Drew says. Smaller gatherings can make things easier for caregivers and those with Alzheimer's. Noisy events and big groups can be overwhelming, so Drew suggests preparing the ailing relative by talking about holidays ahead of time, and looking at photos of family members. Providing a quiet room where the person can rest during the celebration is helpful, too, she says.
For Mary and Terry, taking some of the pressure off has made Christmas more bearable, but they can't shake the sense of loss that comes with it. "For me the hard part is that my mother-in-law is still with us physically, but mentally she's not there," Mary says. "It's almost like having somebody that's a stranger at Christmas."
Last year they took what felt like a radical step — they left. With Helen in good hands, they flew to Hawaii to spend Christmas at the beach. This year they'll be at home, but that's all they've decided. Maybe they won't celebrate at all.
But Terry will put up a tree in the small apartment he and Mary built onto their house for Helen. She's sitting at a table, 25 puzzle pieces spread out in front of her, when Mary brings out a box full of ornaments. "Helen, Christmas is coming up soon," Mary says. "What do you want for Christmas?"
Helen looks up from her puzzle. "All I ask is to be in good spirits and in good health so I can come and show myself off when we have the party."
Mary raises her eyebrows and glances at Terry. "You want to have a Christmas party this year?"
DAVID GREENE, HOST:
Today in Your Health, a new test for hearing loss. It's actually a test you can take over the phone.
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But let's hear first a story about the holiday season and how difficult it can be for families dealing with Alzheimer's. It can be especially difficult if the person with the disease is the one who used to organize family gatherings. Vanessa Rancano visited one such family to find out how it's coping with the holiday.
VANESSA RANCANO, BYLINE: On the Northern Virginia farm where Helen Downs spent her childhood, Christmas meant a freshly butchered hog and an epic family meal. When she had her own children, Helen brought this spirit of abundance to their home in Fairfax.
TERRY DOWNS: When I think about Christmas growing up, I remember my mom cooking in the kitchen for hours.
RANCANO: That Helen's son, Terry Downs. He and his wife Mary still get excited talking about the feasts his mother made - turkey and glazed ham, two kinds of stuffing, cinnamon yeast rolls.
MARY DOWNS: His mom just put out a spread. And I mean, and she did it all. I mean, she did everything from soup to nuts.
RANCANO: Helen wasn't just the cook. She was the gift giver, the decorator, the heart of Christmas. So when she was diagnosed with Alzheimer's and moved in with Terry and Mary, the big celebration fell to them.
M. DOWNS: These are all your ornaments.
HELEN DOWNS: Oh.
M. DOWNS: You're going to decorate a tree. We're going to put a tree right here. You like that?
H. DOWNS: Oh, yeah. I always had a Christmas tree. I've always had one.
RANCANO: Caring for Helen as her mind deteriorates has never been easy. But every year, the holidays make things harder.
T. DOWNS: What is that, mom?
H. DOWNS: Looks like a reindeer.
T. DOWNS: That's right. Who made that?
H. DOWNS: I don't know. Who made it?
T. DOWNS: Raymond did.
M. DOWNS: Raymond made those too.
T. DOWNS: Your husband.
H. DOWNS: Raymond did that?
T. DOWNS: Yes.
M. DOWNS: Yeah.
H. DOWNS: Oh, I want to keep this then. Can I have it?
T. DOWNS: (Laughter) Yes.
M. DOWNS: Yes, you can. You can have it.
RANCANO: For Terry, it's hard to see his mother's ever-worsening condition. It's been seven years since Helen moved in with them. And caring for her is beginning to take its toll.
T. DOWNS: We're tired, and we're trying to just get through Christmas now versus maybe celebrate Christmas.
RUTH DREW: There are families in every town, in every state, in every county across the country that are dealing with the realities of Alzheimer's disease.
RANCANO: Ruth Drew runs the national helpline for the Alzheimer's Association. Her advice is to keep things simple, and ask for help. That's what Mary's learned to do.
M. DOWNS: That's the biggest thing about Christmas for me, is that I don't have to make it perfect anymore, that Christmas is kind of messy (laughter).
T. DOWNS: Hey, mom, who is that?
H. DOWNS: My little Santa Claus.
T. DOWNS: Yeah, that's Santa Claus. You still recognize Santa Claus. It doesn't get any better than that (laughter). That's great.
RANCANO: Terry says Helen can still find joy in the present, even if she can't remember the past. Vanessa Rancano, NPR News.
GREENE: All right, we're wishing that family a great holiday. Transcript provided by NPR, Copyright NPR.