by Jane Heller
Jane: How’s your family doing now?
Michael: My grandfather passed away, but my family got healthy while he was still alive. We went from worst-case scenario where I think my parents were on the verge of divorce, my father was about to have a heart attack, and my mother was in a severe depression, to a family that united. The process of going through this really helps you understand who is important in your life. And it makes you realize just how short this ride is and how you better do something cool with it.
CHAPTER 14
Using the F Word, as in Facility
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“Placing someone in a care facility very often turns out to be the best solution for everybody. The caregiver can stop changing diapers and just relate to the person who needs care, allowing them both to spend quality time together and make a few more memories.”
—TINA B. TESSINA, psychotherapist
My ninety-five-year-old mother is a smoking-hot chick. She has an eighty-eight-year-old boyfriend, walks a mile a day on a treadmill, and is an enthusiastic member of her monthly book group. Until recently she was still zipping around in her Subaru—the sporty model with a spoiler. She’s in remarkably good physical health (knock on wood), but her memory began to falter a few years ago and I didn’t see it coming, nor was I prepared to modify my own behavior accordingly.
I was staying at her house during a weeklong visit, and we were talking about the Yankees, our favorite baseball team.
I said, “Remember the time I was in the city with Michael and we ran into Scott Proctor on Fifth Avenue?” Scott Proctor was then a Yankees relief pitcher.
“Michael wasn’t there,” my mother said matter-of-factly. “You and I were in the city together when we saw Scott Proctor.”
“No,” I said. “Michael was with me, Mom. I was in the city to meet with my publisher.”
“I was with you that day,” she insisted. “We had lunch.”
Instead of recognizing her confusion and leaving the subject alone, I kept it going, motivated by the need to be right. “You and I haven’t been in the city for lunch in years,” I said. “I was there that day with Michael.”
Her expression darkened. “So you’re telling me I’ve lost my marbles, is that it?”
It dawned on me in that moment that my mother, who had always been so sharp, hadn’t lost her marbles but was having a memory lapse.
At first I wrote off the episode with: “Well, she’s in her nineties. Give her a break.” But as time went on, it became clear that she wasn’t just getting the specifics of events mixed up and forgetting names; she was repeating questions she’d asked only minutes before and becoming disoriented when there was too much information thrown at her at once. The fact was that despite her youthful appearance and her ability to not only laugh at herself but also to skillfully cover up her memory problems in social situations, her lifestyle needed to change. The question was how? And who would make her change it?
She was resistant to any kind of meddling by her “jailers,” as she referred to my sister and me. She wouldn’t give up the keys to the car, wouldn’t wear a Life Alert necklace, and wouldn’t have anybody come and live with her, despite the fact that her house is on seven acres at the end of a private road with a driveway so steep even the deer want no part of it. And she absolutely, positively refused to go into a facility for seniors or, as she put it, “one of those places.”
But then she did an about-face. Some of her friends and relatives had sold their houses and moved to an imposing complex in Westchester, so the idea suddenly seemed acceptable to her. The community offers every conceivable type of residence and boasts a full array of cultural amenities and dining options. My sister and I set about trying to make the move happen for Mom. We were relieved that we would no longer have to try to convince her that her days of living alone were over.
I did some research and found an organization that handles such moves on a regular basis—a group of experienced women who come to the client’s house, sort through years of clothes and furniture and knickknacks, measure the new space versus the old space, and help to figure out what to give away or sell and what to bring.
After a couple of visits with my mother, these women could see that she wasn’t up to the task. The whole process of moving—or, more accurately, of confronting a change in her environment—overwhelmed her.
It was time to go to Plan B: find her a live-in companion.
Of course, Mom hated that idea—I mean, seriously nixed it.
“I am not having a stranger live in this house following me around!” she’d say over and over. “I need my privacy. And I don’t need a nurse!”
She didn’t need a nurse, but she did need someone to drive, shop, cook, accompany her to doctor’s appointments, make sure she took her medications, keep her from feeling isolated and lonely.
We stayed on her about hiring a companion, and eventually wore her down with: “Do you want to fall and break your hip and be stuck here for days all by yourself?”
My sister and brother-in-law interviewed several candidates and were thrilled when they met Sandy, who had experience as a professional caregiver, came with terrific references, and spoke in a lilting Trinidadian accent that was as upbeat as her personality.
Mom couldn’t help but fall in love with Sandy, and the two of them have been living happily ever after since the day they were introduced. Thanks to Sandy, my mother is healthy and well cared for in her own house. They go shopping, have lunch with Mom’s friends, take trips, even visit Mom’s boyfriend together at the assisted-living facility where he now lives.
For other elderly parents, staying in the house with a live-in caregiver might not be an affordable option or even the best one. And for some seniors, particularly those with dementia, a facility is often a necessity.
Still, there are many caregivers who try to compromise by keeping their loved one at home and taking advantage of adult day-care centers like the Friendship Center here in Santa Barbara.
“The Friendship Center was started in 1976 by a group of social advocates who saw a need in the community to have supervised care for the aging during the day so caregivers could have a respite,” said Heidi Holly, the center’s executive director. “We’re finding that more and more adult children are caring for their relatives at home—the sandwich generation of baby boomers who have children and are taking care of their elder parents. Our government needs to do something about this burgeoning situation of baby boomers living longer. It’s going to be, as they say, ‘the silver tsunami.’ ”
The Friendship Center is open from eight a.m. until five p.m. They not only have buses that pick up their members around the city but they provide meals, administer medication, and offer activities that keep the members engaged.
“And we’re affordable,” said Heidi. “So many caregivers have a fear of the unknown when it comes to their finances. They’ll say, ‘What am I going to do about Mom next? Live-in facilities can run $8,000 to $10,000 a month! I’ll be broke!’ We work with people, so they pay what they can.”
Sounds like a good deal to me, although I’m not sure my mother would have agreed to go if she’d been living with one of her children.
“When older people are hesitant, I say come and hang out and try it for a day,” said Heidi. “Have lunch and meet some of our members. What’s key is the socialization. Studies have been done where people who stay socially engaged are happier.”
The Friendship Center and other adult day-care facilities provide an invaluable service for their communities and, of course, for caregivers—a fabulous option.
As I said, I’m lucky my mom is living comfortably at home, but if she couldn’t manage adult day care and it became necessary for her to go to “one of those places,” how would I deal with the guilt of removing her from familiar surroundings and sending her off to live with a bunch of strangers? How would I deal with the realization that the move would be her last stop? I pride myself on facing reality,
but the whole notion of placing a parent in a facility when he or she desperately doesn’t want to go makes me want to crawl into a hole and hide.
I reached out to my caregiver support group to see what their experiences have been.
Barbara Blank: “My father just moved into a community. Right now it’s independent living but there’s assisted living in the same complex if he needs it. I had been bringing home brochures about this place, because we all knew the time was here, but he was resisting. I would make appointments there and he would cancel them. The day we were going over to sign the papers was very traumatic for him. He said, ‘I’d rather go to the cemetery.’ I said, ‘Okay. Get in the car and we’ll go to the cemetery then.’ He looked up and smiled. I was calling his bluff and the humor brought him back.
“Ultimately, it was his decision to move. His eyes were getting bad and he had fallen a couple of times, and he realized that his balance wasn’t right. He sold his car himself; he knows he can’t drive anymore. He’s still very bright and functional. He takes his own medicine. He makes his coffee. He has a martini every day at four thirty. But now he’ll be in an environment that’s safer, where he’ll get fed and where he’ll have maid service every week.”
Linda Dano: “I got my father placed at Mary Manning Walsh, a Catholic nursing home in New York. The only bed they had available was in the women’s ward. So he was surrounded by women for his entire two-and-a-half-year stay there. Some little old thing, who also had Alzheimer’s, saddled over to him and they became a couple. My mother was okay about it. She was happy someone would sit with him. When she got dementia, I hired a caregiver for her and bought her the apartment next to mine. Eventually, I took her out of New York and put her in a lovely nursing home in Connecticut and she flourished there before she started to go downhill.”
Victor Garber: “At a certain point my mother couldn’t stay in her apartment, so I started looking around for a facility. That was a depressing proposition—just to go around and see what’s available. I couldn’t imagine putting her in the places I saw. They were overcrowded and there’s that smell when you walk in. Unless you have a lot of money it’s pretty bleak.
“I was in a more fortunate position and I never took that for granted. I settled on Belmont Village in Los Angeles. It was a new facility and I passed it on my way to work every day. One day I just went in and looked at it and I thought, this is it. I got her a really beautiful two-room apartment with a view. For the most part, Belmont Village worked out very well. My mom loved to sing, and karaoke was a community activity in the main sitting area. She would get up and sing and everyone’s mouths would drop because she had a beautiful voice.”
Cecilia Johnston: “I remember my mom and I were sitting at Thanksgiving and she was talking about a friend who lived at the Samarkand in Santa Barbara and this friend had invited Mom to lunch there. She said to me, ‘Wouldn’t it be wonderful to live someplace where you never have to cook again?’ I could just see the light bulb go off in her head. The next thing I knew she was on the Internet and signed up for the Samarkand. She and my father have lived there since 2000. They have levels of care and we’ve gone through all of them at this point—from independent living to skilled nursing. The best gift my parents have ever given me was to move to the Samarkand on their own. It took so much of that burden away from me. But it’s been a big adjustment.
“You know how everybody says, ‘I wish my child came with a manual?’ I wish my parents came with a manual. You don’t know what’s going to come down the pike.”
Cissy Ross: “With me there really was no choice about moving my mother to the Samarkand. She had been kicked out of her assisted-living place in Florida because they said she needed too much care. My sister had offered to take her in New York, but I felt it was easier for me to have her here in California. I was in graduate school and had a more flexible schedule. My mother was extremely businesslike about it. And she was trusting in our judgment—not thrilled but practical.”
Diane Sylvester: “I brought my mother up to Santa Barbara from Los Angeles to live at the Samarkand. In the beginning she was in assisted living there and was fairly independent. She could walk and take care of herself and eat at the dining table. We had Thanksgivings and Christmases with her there, and it was nice. The situation deteriorated when she started to fall and had to move into skilled nursing, where she was for three years before she died. It worked out well. I feel like I was given the last couple of years with my mom. They were beautiful years. So all the hell I went through was worth it.”
Jackie Walsh: “About five years after my father passed away, my mother was diagnosed with macular degeneration. She called me one day and said, ‘Jackie, I’ve made a decision. I’m not going to drive anymore. If a child ran out in the street, could I stop fast enough? No.’ She never got into the car after that and she lost a lot of her independence.
“It was her choice to move to the Samarkand. At first she was in her own apartment in independent living. As her eyesight diminished she had an apartment but with a full-time nurse on staff. On her ninety-fifth birthday, she was getting all ready to go out for lunch and she slipped, fell, broke her hip, and ended up in skilled nursing. She was there for three years until she had a stroke and lived about a week. But moving there was always her choice.”
Clearly, with our aging population in this country, care communities are the wave of the future. Michael and I don’t have kids, so someone will have to take care of us when we get really old and decrepit. Will that “someone” be a parade of paid staff members at a nursing home? I figured I’d better ask a person who runs “one of those places” what I can expect in case I’m shipped off with or without my husband. I interviewed Elizabeth Schierer, director of assisted living and memory support at Maravilla, a seniors’ facility in Santa Barbara.
Jane: How many patients do you have at your facility?
Elizabeth: Patients? Never use that word. They’re residents.
Jane: Sorry. How many residents do you have?
Elizabeth: I think it’s somewhere in excess of 350. And we are not a facility—that’s the F word. Never say that either.
Jane: What’s the correct way to describe Maravilla then?
Elizabeth: We’re a community. We have the pleasure of working in the residents’ homes. That’s the thought process.
Jane: What’s the social life like? Do the residents get along with each other?
Elizabeth: In general they do. But there can be cliques.
Jane: You mean like in the movie Mean Girls?
Elizabeth: Exactly. In the dining room, people go, “Why are you sitting at my table in my seat?” Or “Why are you wearing that today?” It’s just like high school only more exaggerated. There are bullies I have to deal with.
Jane: There’s bullying at a seniors’ community?
Elizabeth: Oh, yeah. And we have people that hoard food. Or maybe they like to “shop” in the laundry room and accidentally wear women’s underwear. You get everything—even sex.
Jane: Come on!
Elizabeth: I had a ninety-nine-year-old man who wanted to meet with me to talk about the fact that one of the female residents wanted to sleep in the apartment with him. He was asking my permission.
Jane: As if you were his mother. What did you say?
Elizabeth: I said, “Well, you’re ninety-nine years old and if she’s consenting and the family is aware then go for it.”
Jane: You mentioned his family. Do you get much interference from family members?
Elizabeth: It’s really annoying when we have something in place because it’s what’s best for the residents and a family member will say, “I’ve been on WebMD and they say it should be this way.” Suddenly they assume the role of expert and don’t listen to us. Also annoying is when a family member wants a laundry list of things for the caregivers to get done. “Make sure there isn’t one Kleenex dropped on the apartment floor. Make sure the shades are open this amount. Make sure t
he TV is set on this channel.” But there’s such guilt among family members around the issue of moving their loved one here.
Jane: How does the guilt manifest itself?
Elizabeth: A lot of phone calls and some overinvolvement. There’s a real separation anxiety at first. The interesting thing is that within a month or two it’s gone. The residents are happy and the family is happy, and life goes on.
Jane: What if you get a really difficult family member? How do you deal with him/her?
Elizabeth: You always listen to family first because there’s no doctor or caregiver who knows the person better than the family. And then you try to work within the boundaries and compromise.
Jane: Do you mind the complaints?
Elizabeth: No. My mantra to my staff is “When we know better, we do better.” But there’s a way to complain. Don’t start out yelling. Take a breath and then be specific and realistic. And remember: I’m so on your team.
Jane: You said there’s a lot of guilt with family members. I would imagine there’s denial too.
Elizabeth: Absolutely. I have a physician whose mother lives in the community. She has dementia. She needs to be transported to my memory-care unit, but I can’t get this professional physician to do it. His answer is, “I’ll have to check with her and see how she feels.” She doesn’t remember how she feels from one minute to the next! There’s all this resistance because he doesn’t want to think of his parent that way. There’s nothing I can do unless it gets to the point where I decide it’s a safety issue.