ALTERED REALITIES Dear Friends, Those of you who’ve been to my workshops or lectures know how concerned I am about respecting the altered reality of our friends, companions, and family members with dementia. Altered reality is exactly that. It's reality in a different perception, brought on by hallucinations, daydreaming, or a flash memory trickered by who-knows-what? It’s important that we understand that when a person slips into reliving an event from her past, she is not remembering the way an abled person recalls something. Alzheimer’s has changed her perception of time and space. She relives her memory with as much veracity as she experiences the here-and-now. The present and the past overlap and commingle. It’s usually counterproductive to try to convince the person that she is “just remembering” something. Instead, by joining her in this altered reality, we reaffirm the trust and she will be more willing to work with us when we introduce a diversion. You may have to use a "loving lie" (also known as a "therapeutic lie")* *Loving Lie: A loving lie may sound deceiptful to you, but when it's based in the other person's altered reality it becomes the "truth" for that person. The following is one of my favorite examples of this approach: Charlotte's Wedding My friend Paul is an activity director at a nursing home. He told of one particularly wonderful “altered reality” event. Charlotte, one of the residents in the Alzheimer’s wing, was declining in her dementia. She was having growing problems communicating and was increasingly withdrawing into her own world. She had gone from one absorption to another. At one point, she had fixated on germs - on her clothes, in her food, and on anybody who might touch her. At another time it was something outside one particular window visible only to her. Her fixations usually lasted only long enough for the staff to readjust their approaches to her “reality de jour.” However one obsession took hold of her and had lasted a couple of months by the time Paul and the staff decided they were up against something new. It had seemed innocuous at first. Charlotte would sit for hours at the secure entrance door anxiously looking out onto the front walk, scrutinizing every single visitor, and reacting with obvious disillusionment. Over the weeks the disappointment took a turn toward distress. She would increasingly be seen weeping. Staff decided it was time for a change. Because of her difficulties with communication, it took a concerted effort for them to discern that Charlotte’s vigil at the door was for her beloved, who had assured her that he would be there any day now to marry her. A conversation with her niece revealed that Charlotte had in fact never married. None of this latest obsession made any sense to the niece; she had never heard of a pending or failed wedding. They speculated that possibly her sweetheart had gone off to war and never returned. Charlotte was far too incommunicative to be able to tell them anything other than: “He’s coming soon and then we’ll be married.” (Or at least the workers were pretty sure that’s what she said.) The staff tried all kinds of diversions and was repeatedly met by Charlotte’s indifference. The niece took her out to twice as many lunches as before, but as soon as they returned, Charlotte would resume her brooding vigil at the door. Charlotte's personality changed. She had always been gentle and cooperative in spite of her hallucinations. Now she was getting agitated and started refusing to eat, because of the imminent arrival of her fiancé. Paul realized that drastic measures were needed. He decided they would have to celebrate her “wedding.” The staff readily committed to help make this happen. At a local thrift store, Paul found a wedding gown that promised a reasonably good fit. One of the nurses brought a bouquet of silk flowers from the hobby shop. On the designated day, the wait staff rearranged the furniture and decorated the dining room, the kitchen baked a tiered “wedding” cake and family members, who happened to be visiting at the moment, were recruited to stay on as “wedding guests.” Staff made sure that all the residents were dressed in their Sunday best. Everything was in place except for the fiancé. What to do? So Paul decided to act as the stand-in for the groom. He pinned a showy white silk rose to the lapel of his coat. One of the other residents, a retired organist, played a pretty good simile of the wedding march. The bride beamed in all her finery as she was walked down the “aisle,” on the arm of the cook. The janitor, a long scarf draped around his neck, performed the “ceremony.” It was a glorious affair. The reception was the best party the nursing home had had in ages, - if not ever. Charlotte basked in the spotlight for the rest of the afternoon. By the next morning Charlotte seemingly had forgotten everything, but her demeanor had changed; she was calm and content. She didn’t go near the entrance door. The subjects of fiancés and weddings never came up again. Nobody ever learned what event in Charlotte’s life had bubbled to the surface because of the disease - or if this had been a pure fantasy. But thanks to Paul’s creativity, it apparently had been resolved for Charlotte. She was back to being her contented and gentle self. I WANT TO GO HOME! The following inquiry brought up a very common problem. The response is directed at the caregiver/daughter, but everything is equally applicable to any caregiving situation, including care facilities. Hello Jytte, I have a private client whose daughter is her primary caregiver. The mom and I spend about 3 hours/week together, giving the daughter respite. Recently, the daughter has asked me about tips for how to handle conversations about "home". The mom is persistent in wanting to know where her car is and when she's going home. She is receptive to the information when the daughter tells her that her brother has the car and that she now lives in Santa Fe with her, however she soon forgets and the same questions come up apparently every evening. The mom also requests to speak to the brother frequently, and both he and the daughter are increasingly frustrated. The daughter asked me for ideas. What are your tips? I'm sure this is common as short-term memory deteriorates. I appreciate your input! Dear Friend, Your Mom’s behavior is one of the most common situations faced by caregivers of Alzheimer’s people: Preface: I’ll take the liberty of making certain assumptions about your situation in order to make this universal. If your family sold your mother’s house and car, it’s a topic best left alone. The truth in this case can be so devastating that it may plunge your mother into a deeper state of dementia and possibly bring on depression as well. The house status may be the first “loving lie” that the whole family must embrace. If she asks directly about her house and car, you can tell her that everything is fine and being looked after by a trusted family member. ***** You moved your mother into your house after it became clear that it was no longer safe for her to live on her own. She’s been thriving and gaining weight since she has been living with you. You’re feeling really good about her progress. She ought to be happy that you rescued you, right? You know this was a necessary move for her wellbeing, but she probably doesn’t look at it like that. To her mind she was doing just fine in her own house. There’s a universal emotional reaction to the concepts of “living” in a place or “being at home,” surrounded by our own stuff and living by our own routines. As wonderful as you are as a caregiver, it will take a while for Mom to feel that she’s “living at home” at your house. It may help you to think of it as a grieving process. Losing one’s independence is as devastating as losing a loved one. ***** When she insists on going home, she may be thinking of her most recent home or she may be alluding to her childhood home. Your reactions should be the same, either way. I suspect that often it has little to do with an actual location, but is rather an expression of loss. Your mother has lost her independence and freedom. You’ve been trying in vain to reassure her by reminding her that now she “lives” with you. In her mind, this is your home; she may be visiting in your house, but she “lives” in her own home. For the time being, try telling her that she’s “staying” with you rather than “living” with you and then take the opportunity to tell her how glad you are that she’s there. If she continues to talk about her own home, acknowledge her feelings, but don’t linger on the negative; instead, try talking about things that she used to do in her home: what a great gardener (cook, ironer, silver polisher or ?) she is and how you could use her help with some of those things while she’s “staying” with you? Then, use it as a lead-in to a diversion: “Don’t you think this conversation deserves a cup of tea?” or -go for a walk, - read this new magazine with me, -help me with the cookies – (or whatever fits the moment.) The point of this exchange is to help her feel included, safe, and validated. ***** You can also help your mother readjust faster by your choice of phrasing and words. Include her by using “we”, “our”, “us”, etc. as much as possible. Small nuances in our speech can be very powerful. Feel the difference in the following two statements: “Mom and I are living together. Come visit us at our house.” Versus: “Mom lives with me now. Come visit her.” ***** When these obsessions occur mostly in the evening, your mother may be “sundowning.” Even if we’re not aware of it, many of us are affected by the waning light in the afternoon and this reaction may be aggravated by Alzheimer’s. - or she may miss what she used to do in the evening. If you have some idea of what her routine used to be, offer her something similar. In lieu of that, try to engage her in a low-key activity in the evening, like cutting coupons, folding laundry or anything else that’s repetitive, absorbing and calming. While she’s “working,” reiterate how happy you are to have her staying with you and how helpful she is. Use compliments as much as you can, as long as you can keep them sincere: “ I really appreciate your help. You’ve always been so good at this.” If her persistent questions are predictable, either by timing or body language, be proactive, rather than reactive. When you sense the questions coming, preempt her by telling her once again how delighted you are with her company and then go to a diversion. When you validate her feelings about wanting to go “home” and simultaneously build on her sense of belonging with you, you’ll find that her obsessions will fade out or at least be greatly diminished. “Sundowning or Body Clocks?” Sundowning Quite a few people are sensitive to the waning light in late afternoon; when this affects people with Alzheimer’s or related dementias, it’s known as sundown syndrome or sundowning. In some cases sundowning causes agitation, a change in personality, or increased confusion. In cases of serious agitation diagnosed as sundowning, it is quite common to prescribe an anti-anxiety medication. Before we medicate people to change their behavior, I believe we need to explore other possibilities. In my experience more often than not, these behaviors have been reactions to people’s internal body clocks rather than reaction to late day light. Body Clocks We all have more or less active body clocks. We wake up a few minutes before the alarm goes off - or we get antsy at dinnertime, whether we’re hungry or not. Most of us spend most of our lives in regular routines. Just because a person has “retired” from a job that she held most of her life, doesn’t necessarily mean her body is aware of her new life of leisure and come her old “quitting time” she may have the urge to “go home,” or she may feel incomplete until she has “closed the books” or “punched out.” What to do? If the person in your care exhibits distorted or serious changes in behavior in the late afternoon, I recommend that you explore the possibility that she’s reacting to old body clock impulses, before assuming this to be sundowning. If you cannot identify an exact cause, try to use a diversion that relates to her former life: if she was a bookkeeper, give her a spread sheet or if she worked in retail hand her a cash box with change to be counted. (Whether or not she actually engages in the project, be sure to thank her for her help.) You may have to use a loving lie to help her out of her distress. A loving lie may sound deceiptful to you, but as you'll see by the examples below, it becomes her truth as it is based on her reality at the moment. Marge Marge had been from moved her own apartment to the secure Alzheimer’s wing of her facility. There had been no attempt to gently transition her into this restrictive environment. She recognized right away that this was a secure unit (locked.) and was understandably devastated. Daytime was not bad, all things considered; she was confused and unhappy, but tried her best to fit in, but in mid-afternoon she was at the locked door trying in vain to work the code on the keypad. When her attempts failed she started pounding on the door and yelling for someone to open it. Several minutes later she had collapsed into a pile on the floor, sobbing. The staff tried valiantly to coerce her back into the common room with no luck. Finally two aides dragged her away from the door. Once they had gotten her into the common room, it took considerable time and effort from both of them to calm her down. During the day Marge continued to adjust quite well. She was by nature a social person and during that first week, she was quick to make friends with the other residents. However, by mid-afternoon she was back at the locked door and her agitation increased. By the end of the week, we knew we had to intervene one way or another. We decided to start by assuming this was a body clock reaction rather than sundowning. A conversation with her daughter bore this out. She revealed that when she and her siblings were young, Marge would routinely pick up them up from school every afternoon. This information immediately explained her outbursts. We suspected that the stress of the move had activated her old body clock and sent her into this altered reality. In her mind, she was a young mother and her children were stranded in front of the school and this locked exit was preventing her from reaching them. No wonder she was panicked and hysterical. The Loving Lie: Once we understood her history, we decided to use a loving lie to help her. The following afternoon when Marge was once again pounding on the door, we “relayed” a message from her friend who had called just then. We told her that her friend would pick up all the children from school today. Sensing that Marge wouldn’t want any favors from anybody, we decided to add that her friend expected Marge to pick them up tomorrow. She reacted with immediate relief, reverted back to her “present” self, and readily accepted our invitation to join the others in a cup of tea. We used our loving lie for the next couple of weeks until one afternoon when she simply stayed in the common room and shared tea with the others. She seemed to have forgotten all about the school, the children, and the exit door. I took this as a sign that she finally felt safe in her new environment. *** Betsy Like Marge, Betsy was social and easygoing. She cheerfully participated in activities. However, around 4 o’clock in the afternoon her personality changed. On better days she would simply be sullen and distant; on the worst days she would become restless, fidgety, and agitated, sometimes to the point of tears. This had been going on for weeks and it had been assumed to be sundowning. When she was particularly agitated, we tried to distract her and get her involved in activities. It might work for a few minutes, but before long she would start pacing around the serving counter. Because her behavior was so specific, we decided to explore the body clock possibility. We learned that her husband was a stickler for rigid schedules and during the fifty years of their marriage Betsy had served dinner daily at six o’clock sharp. Once we learned this, her agitation made sense. In her mind, Betsy needed to prepare dinner and there was nothing for her to work with. The dining room in the dementia wing had a small kitchen, but it was only used to hold the meals brought down from the main facility kitchen. Ideally, we would have asked Betsy to help with food preparation, but unfortunately all the meals arrived fully prepared. We did ask her to help set the table, but that only worked to accelerate her agitation. We had to find another solution. The Loving Lie: We told Betsy that someone else was doing the cooking tonight, because she deserved a day off after all those years of making dinner every single night. She accepted our story with no hesitation. She welcomed the break, which was understandable; apparently her husband was quite controlling and had run a tight ship, including the household. We used slight variations of this theme for the next several days whenever we needed to help her relax. By the end of the second week her restlessness was gone and she was happily interacting with the other residents right up till dinnertime.