Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Ben is with me in our living room when I get the call. I’m shaking inside as I tell him what happened. He gives me a long hug. A half hour later I start to have a panic attack—the first in several years. My back heats up; I feel warmth and pressure in my chest, and I’m agitated. When this happened before, well before Mom moved in, I went to the emergency room no less than five times, scared I was having a heart attack. It was diagnosed as either a panic attack or an allergic reaction to something, no one was sure. I am sensitive to wheat, and had wheat this evening. Now I ask Ben to find one of my old medications for anxiety. I take a half dose and feel better within minutes. I pat the couch so Ben will sit next to me and he holds me in his arms.

  First thing in the morning, even before I brew my coffee or take a shower, I sit at my desk and skim the book The 36-Hour Day for information about dementia and violent behavior. I read that “combativeness” is common in later stages if the person feels threatened or stressed, but I can find no examples of people trying to plunge sharp instruments into other people’s necks—just biting, slapping, kicking, that kind of thing. What Mom did last night seems to me to be more homicidal, more evil. At the moment I want nothing to do with her. If I thought it was purely the dementia I would feel sorry for her. But that anger is too much like her anger when she was anxious and kicked me out of the house. I’m afraid that whatever is left of that anxiety buried deep inside her will make her more prone to dangerous acts of violence now that any inhibitions are gone.

  I search online for “Alzheimer’s disease, violence” and find nothing like “my mother tried to stab an aide.”

  I wish the Alzheimer’s caregivers support group was meeting the following Tuesday, but it will be in a few more weeks. I consider calling Dan, the facilitator.

  As it’s a weekend, Diane, the director at Elm Haven, returns my call from her home. Does this kind of thing happen often? I ask. Diane says no, it’s the first time something like this has happened. Wow, I think. Mom is a freak, a nut job who’s dangerous to others. But, Diane says, she talked to the RA and the RA is fine and Mom is back to her old self, “sitting happily in the library, her eyes that bright blue.”

  Diane tells me that before Mom grabbed the pen she was not acting agitated, but she did say to the RA something like, “This is my space—get out of my space.” Diane tells me as well that my mother might have the stomach flu that’s going around and that’s why she acted out as she did. They will just keep an eye on her and I shouldn’t worry. “Feel free to call me at home,” she says.

  I’m beginning to see that Diane really might be open to talking to family members as a social worker or counselor, that’s she not just saying it.

  In the afternoon I call Maggie and ask her if the private aide, Candy, could take Mom out to only one place, for a maximum of three hours, rather than to two or three places for six hours, as she has done a few times. I tell her about Mom’s incident Friday night after she was out with Candy, and how I was told that at dinner Mom was agitated, talking on and on about “that bitch.” I tell her I’m not assuming that there is a correlation between her time with Candy that day and her violence later that night, but I want her to know that my experience with Mom, even before the dementia, is that she may seem to be having a good time in the daytime but will get burned out if there is too much going on. She’ll turn against people in the evening, wanting only to be left alone. Her brain seems to go on overload.

  Maggie listens patiently and agrees to limit Mom’s outings to one or two destinations, no more than three hours, no problem. Then quietly she asks me how I’m doing. I feel grateful, again, that someone asks me that.

  “I just can’t understand what happened. Have you ever heard of something like that?”

  “Sure, that kind of thing can happen, especially if the person is afraid. In your mom’s mind she could have been defending herself. She might have felt cornered.”

  I tell her what Diane said about Mom saying, “This is my space, get out of my space.”

  “The girls,” Maggie says, meaning the Elm Haven RAs, “should have known that if your mother felt scared or angry or said anything like ‘get out of my space’ that they should have backed off and left her alone for a few minutes.” She sounds more upset with how the RAs acted than with Mom’s behavior.

  For the first time since Friday, I feel less ashamed of Mom, less afraid that what she did was abnormal even for people with dementia. I feel as if it’s going to be all right.

  An Evening to Remember

  Thanksgiving morning Morgan wakes up with the stomach flu and throws up every half hour. I have a mild case of bronchitis again and struggle to make two pumpkin pies and one banana cream pie as Ben starts the turkey, stuffing, and cranberry sauce. At mid-day I decide that, even if it’s a holiday, it’s just a really bad day to have my mother over for a meal. As Mom used to say in her 12-step program, “Remember that a holiday is just another day. There’s no need to get stressed out trying to make it perfect.”

  Surprisingly, I feel no guilt. I assume that Mom will not remember what day it is, even if the staff serves her turkey and pie. She may appreciate the idea of Thanksgiving for a moment, but then the thought will be gone.

  A week later I take Mom out on a Friday night to hear the Vienna Boys’ Choir perform at a theater downtown. She has always appreciated classical music and I know she will love this concert, but I dread the whole process of getting Mom to the theater on time. I called Elm Haven to tell them when I’d pick her up, but when I arrive she still needs to be taken to the bathroom. When I finally get her in the car, I remind myself that if we miss the concert, I could just take her out for ice cream and bring her home. But—darn it—I really want her to be able to enjoy this performance. Most likely she will never have another chance to hear the Vienna Boys’ Choir in person. I have to get her there, I think.

  We make it with a few moments to spare. Throughout the concert Mom sits quietly; she knows how to be a good audience member. When I was in middle and high school, Mom would drive an hour in order that the two of us could hear the Rochester Philharmonic. Her knowledge of how to listen quietly without disturbing the performers or other audience members must lie embedded in the deepest parts of her mind; she doesn’t talk to me or squirm; with her legs crossed, her hands folded in her lap, and her chin tilted up a bit, Mom gazes at the stage and smiles.

  After the concert, as we walk past the stores decorated for the holidays, Mom turns to me and says, “I want you to know...that I just love this—tonight, being with you.”

  I say, “Me, too, Mom,” though I’m not sure what she means. What I hear is not “being with you,” but “tonight.” I want to believe that what she loved the most was the concert. I want to give her these kinds of experiences. What I’m not quite ready to give her each time we see each other is the more intimate gift of my sustained attention, my presence, my self.

  Back at Elm Haven, Mom shines, exuberant. “I had a wonderful time,” she tells the RAs. I’m surprised that she remembers where we were, but she seems to know that we just heard a choir. She lies on top of her bed, and when I kiss her goodbye she’s still smiling; her joy nearly lifts her off the bedcovers.

  • • •

  The next day, after cleaning the cottage, I arrive at Elm Haven for their holiday tea party. An RA tells me right away how much fun my mother had the night before, how much she talked about it. Michelle, the nurse, and Crystal, the sales director, come over to chat with Mom and say hi to me as we sit in the dining room, and they tell me again how happy Mom was when she got home last night from the concert.

  Michelle adds, “You know, we love your mom. We just think she’s a sweetheart.” To Mom, she says, “I could just squeeze you!”

  “You can squeeze me...all you want!” Mom replies.

  Diane, the director, tells me, “Your mom seems happy here. I think she feels safe.”

  I believe her. I no longer suspect the friendliness of the staff to be fake.
They genuinely enjoy the residents and their jobs, and I believe my mother can tell.

  Reckoning

  In late December, when I go over Mom’s bills, I feel nauseated. I have been putting off figuring out how long her savings will keep her at Elm Haven, not wanting to know. I finally sit down with a calculator. She has $7,000 left in her checking account, $55,500 in mutual funds, and $33,000 in her IRA. She has the same incidental expenses as she had at Greenway, such as Medicare premiums and supplemental insurance, with the exception that she now pays $160 a month for Depends. After tapping in all the figures, I estimate that my mother will be able to afford Elm Haven for an additional twenty-one months. That’s longer than I expected, but still not enough time. At seventy-five, she is young and could live many more years with dementia.

  I’m beginning to like the staff at Elm Haven so much that I want to keep her here as long as possible. I consider selling the cottage to pay for her care. I think about how it’s been in the family for three generations, and how renting it in the summer will, over ten years or so, equal the amount we would earn in a sale. I think about how Mom might get injured and have to go to a nursing home anyway. She might die unexpectedly before we spend all the proceeds from a sale. The more I ruminate, the more I believe she would not want me to sell it.

  In 2007 in New York State, she’ll qualify for Medicaid as soon as she spends down her assets to less than $4,200. She transferred the cottage to me in the spring of 2005, and at that time the state had a “look back” period, in which they check for transfers and gifts of assets, of only three years. (It has now been extended to five years, but Mom is exempt because the transfer happened before the law changed.) If we apply for her Medicaid after the spring of 2008, the value of the cottage would not count as an asset. I lean toward keeping the cottage for our children, as their Grammy would want.

  I fear what will come next. To avoid a nursing home, I call Dan at the Office for the Aging to find out if there are any assisted living places in our county that accept Medicaid. He tells me that there are three Medicaid-funded assisted living places within a forty-five-minute drive of our city, but they are not “secure” for people who wander, and they will not accept people who need the level of care that Mom requires.

  It makes no sense to me that Medicaid in our state pays for nursing home care for people with dementia, but usually not “secure” memory care assisted living such as Elm Haven, which costs, on average nationwide, about thirty percent less than a nursing home with dementia care. In 2011 the national average for dementia care in a semi-private nursing home room will be $222 per day, or $81,030 a year; assisted living with dementia care will average $152 per day, or $55,428 per year. I suspect that our government counts on the fact that most adult children fear nursing homes, and our own guilt for considering one, and that we will choose instead to pay out of our pockets for a private facility or care for our parents at home, saving the state billions of dollars a year.

  Dan suggests I call the county’s Long-term Care Services office, the department that finds institutional care for people who do not have private funds, and they tell me the same thing, that the next step in our area can only be a nursing home. I make a note to visit a few nursing homes over the next year.

  Compared to her last six months in assisted living, Mom’s first six months in memory care are extraordinarily peaceful and healthy. She doesn’t fall. And now that she’s taking a melatonin supplement, as Michelle, the head nurse, suggested to regulate her sleep cycle, Mom’s going to bed and getting up at normal hours, eating breakfast and joining the morning activities.

  To stretch her savings, I’ve canceled the private aide through Maggie’s agency. I tell Maggie on the phone that I’m trying to save money in case Mom needs a private aide for medical reasons. I tell her how very grateful I feel for her help and reassurance.

  It’s February and I’m asleep in Ben’s old room at his parents’ house in Queens. We’re visiting for Chinese New Year, the first time we’ve been out of town since our vacation in August. Twice in the night I sit up, jolted out of deep sleep. “Where is Mom? Is she okay?” I ask myself. For a moment I can’t remember if she’s back at our house, wandering around alone, or in bed in her old room at Greenway, uncovered, cold. Then I see her; she’s in the living room at Elm Haven next to the fireplace, and in the dining room chatting with her friends. She’s hundreds of miles away from me but she is safe and loved. She’s fine. I take a breath, close my eyes, and fall back to my own dreams.

  Sex and Dementia

  In early April of 2008, I cash out the last of Mom’s mutual funds in one fell swoop, $52,500, and deposit them in her checking account. Only her IRA remains—$33,700. Each closing of an account sounds to me like a death knell.

  Then, a new shock.

  I get a call from Michelle, the nurse, on a Saturday afternoon. My mother has been in Elm Haven for seven months.

  “Martha, your mom is fine but I need to tell you that we found her in bed with another resident. We found her with Bill.” She pauses. “Our rule is that she has to go to the emergency room to be checked for trauma. She seems fine, but if you can’t take her, one of us will have to take her.”

  I’ve met Bill, a short, portly, balding man with a walker. I’ve seen Mom cozied up next to him on the couch, her eyes shining.

  “Are you sure she has to go? What if I say, as her health care proxy, that I don’t think she needs to go?” I’m not at all surprised that the staff found Mom in bed with a man. I know that my mother is a sexual being. Over the years she’s mentioned her attraction to this man and that. Whatever Mom and Bill were doing was as consensual as sex can be for two people unable to make and remember decisions. And I bet Bill isn’t required to go to the E.R.

  “It’s just a precaution,” Michelle says. “We have to make sure she’s not injured.”

  “Fine. I’ll be right there.” I’d rather take Mom myself than have an RA take her—I can keep her calm and unafraid, and she might be there for hours.

  On my way to the car, I see my neighbor, Karen, one of the facilitators of our village discussion of dementia, the one who works with caregivers and whose father had early-onset Alzheimer’s disease. I tell her my mother was found in bed with a man.

  “Yes!” Karen says. She smiles and gives me a thumbs-up.

  I ask her if her father in the later stages of Alzheimer’s ever climbed in bed with a woman other than his wife.

  “All the time!” she says. “It happened all the time.”

  I tell her that I’m fine with it, I just don’t want Mom dragged to the E.R. each time it happens.

  “I know. It’s crazy, isn’t it?” she says. She shakes her head, then reaches to give me a hug.

  At Elm Haven, I find Mom perky and smiling, sitting in the main living room. Her hair is a bit disheveled. The two RAs who meet me are calm but their eyes are serious, their brows furrowed.

  “I’m sorry I couldn’t clean your mom up,” one says. “She had a bowel movement, but...”—her voice trails off—“I don’t think we’re supposed to clean her up...in case there’s evidence or something.”

  I nod. She hands me a pile of clean clothes for Mom in case I change her at the hospital. “They might need the Depends we found her in, for evidence, too,” she says. “It’s dirty, though.” She frowns again.

  “I guess we should bring it,” I say. “I don’t know how these things work.” They seem to be looking to me to know what to do, but they might have more experience than I do with this sort of thing.

  One asks me if I want to press charges. “We have to ask you that,” she says.

  I tell her no, I don’t, and shake my head. “I think this kind of thing is completely normal. And Mom seems fine.”

  I would expect my mother to initiate cuddling in bed, or more. And I hope the staff treats these incidents as normal and not a cause of upset.

  Mom walks to the car with me without signs of injury or emotional trauma. On the two-minu
te drive to the hospital Mom wants to untie the plastic bag with the dirty Depends to see what’s inside, and she won’t stop when I ask her. I snap at her for the first time in a long time—“Mom, let go!” She holds on tight but I manage finally to snatch it away. I take a deep breath and will myself to start over. My plan is to treat this E.R. exam as just another doctor’s visit, to take the next few hours one minute at a time. Mom probably won’t realize she’s in the hospital; she’ll believe she’s just in a doctor’s office. I plan to squeeze her hand and enjoy her company, even if in between we have to deal with nurses and doctors and a possible exam of Mom’s private parts. If we’re required to go through this, I might as well make it as pleasant as possible for both of us, just another outing.

  The nursing staff treats Mom gently, never asking what happened or too many questions that she can’t answer. I tell her main nurse, right away, just as I did with the aides at Elm Haven, “I want you to know that I’m not worried about this. I think it’s entirely natural.” I don’t know why I think it’s important to say this, but I do. The nurse looks puzzled and says nothing.

  A woman in street clothes with a nametag comes in and asks to speak with me in the hallway. She’s the crisis counselor, she explains, and gently asks me if I think a complete exam is necessary. I say no, and she agrees. A nurse will simply do an external, visual exam to check for bruising.

  As Mom and I wait for a doctor to check in, we share a pint of blueberries I brought from the store, and I hand her a can of raspberry spritzer to sip. I’ve learned to be prepared for long hours in the E.R. I brought a newspaper and a book to read, and took a few extra minutes to drive out of my way to pick up the snacks and food for dinner for the two of us in case we were there through dinner time. I’m no longer willing to leave my mother alone in the E.R., even for a few minutes, to get food from the cafeteria.